Phoned GP yesterday morning to see if my latest urine test results for a long standing UTI had arrived. The receptionist said they were not yet in the surgeries records but as rheumy ordered the test she would have a look at their records and phone me back. To cut a longish story short...to her credit she got back to me pretty quick (was off to my son's wedding later) to say that, much as expected on my part, the infection has still not cleared and to pop in and pick up a prescription for another course of antibiotics. Now, having previously been prescribed 3 courses of nitrofurantoin, to which my bug is supposed to be sensitive to, and which obviously hasn't worked to date, I sort of expected to be given a different antibiotic. So you can imagine how I felt when she said that the hospital (lab I presume) has yet again recommended nitrofurantoin. When I questioned this I was told my GP had said... that's what the hospital's recommended so that's what I have to take.
Not being at all happy with the situation I decided to phone urology as I have a cystoscopy appointment on May 17th to investigate bladder stones. Gave the urology nurse a rundown on my situation, primarily asking why I was being given a seemingly useless antibiotic for the fourth time. I also added that that I thought the lab would have tested my latest urine sampIe with antibiotics other than nitrofurantoin to try and find another that should kill the bug. She said the problem is that the lab only tend to try the commoner antibiotics, and I should continue with the nitrofurantoin and submit another urine sample to my GP surgery after I've finished the course. In the meantime she will speak to one of the consultants and also get in touch with the lab so they can try different antibiotic to the usual suspects on the next sample. I also asked if the cystoscopy would have to be postponed for the second time as I had to postpone a previous appointment due to the infection. She said not to postpone the cystoscopy again even if I still have the infection as I would have an injection, presumably some sort of antibiotic, to subdue the infection before they perform the cystoscopy. She also said that my bladder stones are probably the reason, along with taking immune suppressants, why I'm having so many infections and this one is proving difficult to treat. If so, then it goes without saying that the sooner I get these stones sorted the better.
At last I'm beginning to think that I'm finally make some headway, but am surprised that it's me who's had to take steps to getting this thing sorted and not my GP or anyone else. It seems to me that I've been treated as a common run of the mill case, for want of a better term, and not as an individual with a number of different chronic health conditions that can cause serious issues with my health, which is something I've previously experienced and really don't want to again if it can be avoided. Then again, perhaps my expectations are too high and I should just accept that's how things are?
Due to this infection I've had to stop my RD meds for the last 7 weeks. I was on mtx but had to stop taking it and am supposed to start taking mycophenolate on May 9th. Unless in the unlikely event of this current course of nitrofuantoin clearing this infection, that ain't going to happen. I've yet to have a serious flare, but that certainly ain't going to last. Think it took around 8 weeks to have my first serious flare when I stopped all my RD meds a year ago, so if all goes according to form I'll be having one pretty soon.........
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wishbone
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I too find it difficult to accept that I, as the patient, should be having to look things up, chase results, query medications, ask for review, etc. But then I have only me to think about and worry about and I have the time and the inclination to do so. And I think I get better and more logical treatment as result. Self-management is good - we are there every day managing our condition.
Often some treatment is suggested to me and I ask why. "It's the next/usual drug we give." is the answer. Not that it is particularly suitable for me - and sometimes it is not at all suitable for me because of other problems I have and I have to point this out.
But I worry about those who can't do this for themselves - does anyone else act as their advocate? Occasionally I hear from these pages of doctors and nurses going the extra mile for an individual, but I do feel that the professionals are so overwhelmed by their workload that mostly they can't do it.
Seems like I need to take on more responsibility for my own health, which is something I've gradually been doing more and more of anyway. Fortunately I also have the time to do so, but as you say there are those who are unable to do it for themselves. What also concerns me is that many patients who do not visit forums like this one for advice, hence never read posts such as your above reply , are more knieve and have full faith that their doctors, primarily GPs, as they are at the frontline, will provide the best treatment and care they possibly can for that particular patient. Goes without saying really, that up untiI recently I was one such patient.
Having said that, and returning to my own case. I know that doctors etc are overstretched, but was under the seemingly misapprehension that if a certain treatment was not working then surly things are not so bad that my GPs are so overwhelmed with work that they cannot take 5 minutes or so to have a look at my case history, and then suggest that maybe the next best step for me is to get in touch with urology, which on hindsight I probably should have done sooner, and if it wasn't for information that I've gleaned here, may well still be hesitant about doing so.
When I questioned this I was told my GP had said... that's what the hospital's recommended so that's what I have to take.
If you look on the NHS website, it clearly states that if a hospital or specialist recommends treatment, you are not entitled to it if your GP does not agree to it. It is ultimately up to the GP (presumably as the budget holder). The antibiotic must be a common one which is cheap though I am surprised if any of them are expensive.
If I were you, I would go to Medicare and pay for a private GP appt and get a prescription for a more suitable antibiotic. It is the most practical solution. There are plenty of private GPs in my area and the going rate for a 20 minute consultation is about £45 plus the cost of the prescription. I really don't think it is worth fighting NHS bureaucracy and penny pinching for such an amount.
After paying tax and insurance all my working life (I'm now retired) I begrudge having to pay to go private. That said, I have indeed been thinking about seeing a private GP, and £45 is a lot cheaper than I thought. Maybe not know though as things seem to be progressing, but very likely at some point in the future if I continue to be unhappy with my treatment.
I don't think it's down to the cost of antibiotics as my GP once told me that they are limited to only prescribing the more common type. Would it affect a GP's budget if he referred a patient to a consultant? Not that I needed to be referred as I'm already under one, albeit I haven't seen him for some time.
I've known a few people who have had severe chest infections and could not get a GP appt in working hours or who had only been given a weak antibiotic which had not cured the infection. The trouble with getting a low dose antibiotic is that I think the infection might become chronic, which would disrupt your planned rheumatology treatment. Most GPs only seem to want to prescribe 250mg of the most common and for some infections it is simply not enough.
In my area, the charge is £45 for a 20 min appt. You can book a 10 min appt for £35 and pay the extra if you need longer but unless it is a routine repeat prescription, nothing can be done in 10 minutes. You can also pay extra for a half hour appt. In Central London (usually at commuter train stations), a GP appt is a lot more at around £75. It is better to pay it though than lose your job.
It is just a case of being pragmatic for you, I think. I would make a complaint afterwards about having to do this though. Most surgeries have a practice manager who will investigate the complaint. You could alternatively go to A&E but is it worth the hassle? And you might still not get the right antibiotic.
Bear in mind (though it might be unlikely in your case) that the infection could be a virus. I presume however that the hospital have taken swabs and know what it is.
I recently took a drug for RA. I immediately started coughing and sneezing and thought it was hayfever. I then had a severe upper back pain and was coughing up blood. Against the advice of friends, I made an urgent same day appt at my GP surgery. I waited for two hours (coughing all the time) and was then seen by a medical student who made copious notes which he showed to the GP. The GP then saw me. He did listen to my chest but not much to me. I have had an irritating plegmy cough for years and all doctors said this was an allergy albeit every allergy test was negative. The (new) GP got a bit stroppy when I said I had an underlying infection. He was mad keen for me to stay on the drug for RA (and I was keen because I wanted to see how far it would help the RA) so he gave me a prescription for a strong antibiotic (1500 mg/day) and agreed to a chest x-ray. I have never regretted anything so much. I had to walk 20 mins to the x-ray unit and I was in no fit state to do that. I had to stop for a coffee on the way. The antibiotic did not work and I was getting worse. In fact, I think if I had continued with the RA drug, I would not have survived. I started to get better slowly as soon as I stopped it and after five days the pain in my back suddenly went and I stopped coughing up blood.
I don't think all this would have happened if the GP had had enough time. I only saw him for three minutes and I think the condition warranted a full 20 minute appt. I noted that everybody was pushed in ahead of me - plenty of 20 year olds who had nothing visibly wrong. They could see what a state I was in but just ignored it and palmed me off with a student. In this sort of instance, I would not use them again. It was a viral infection and the only course of action should have been to stop the RA drug. Unfortunately, in your circumstances, I think it would be best as it will mess up your whole treatment plan - of course, it should not happen but it might be the only real solution.
I can relate to some of what you say, especially the part about getting a negative reaction from a doctor when you try to suggest something. I've had this happen with my GP more than once. I am thinking about trying a different practice once this episode is over and would probably have already done so if it did not mean that I would have to travel several miles farther away, which is something that can be problematic as I've had enough difficulty travelling just one mile to my current practice with all the flares I've been having. Is there any point in changing GPs anyway?... I'm not so sure if much would change after reading oldtimer's post. The main reason for my initial post was to try and find out if my expectations of what standard of treatment I get is unrealistic and maybe I should just make the best of things as they are? Personally I don't think I'm getting the standard treatment I should, at least with regard to UTIs, which obviously concerns me as one instigated me getting sepsis and spending 10 days in hospital a year ago, and I'm all too aware that I'm at risk of this happening again.
The 4 courses of nitrofurantoin I've had so far has been 400mg per day. Not so long ago I was prescribed 6 weekly courses of flucloxacillin for a chronic skin condition, which also failed to work. Well 5 courses did as I couldn't see the point of even picking up the 6th course from the pharmacy. Another thing that concerns me taking all these antibiotics is that I have interstitial lung disease and my consultant warned me against taking long periods of antibiotics as they can have an adverse effect on the condition. Great innit!!
Rheumy stopped my methotrexate as soon as they became aware of my current UTI. Won't be going back on it as it can also cause complications with my lungs, which is disappointing as it was beginning to work ok for me. I decided to stop all of my RA meds for straight after having sepsis to lower the risk of getting it again. I lasted 9 months, enough to say that I won't be venturing down that road again, not if I can avoid it anyway! The only positive to come out of that little episode was that I didn't have a single UTI for 6 consecutive months, would have had at least 2 during that time if I was taking immune suppressants. Should add that I have no complaints at all about the treatment I receive with rheumy.
Think I need to get these bladder stones sorted ASAP, hopefully that will reduce the number of UTIs I'm having. Not sure if this is right, but I've heard that providing the stones are not too big they will zap'em with a laser at the same time. Not sure if I'll have a general anaesthetic for that?..hope so anyway. I'm not concerned so much about any discomfort it's just I'd rather not be aware of what's going on. Same goes for the cystoscopy, no chance of so much as a relaxant there though from what I can gather.
Thanks for your time and thoughts Delicatelnput, much appreciated.
I can tell you that swapping GPs has made a *massive* difference to me. I moved from a semi-rural practice, the only one in the village and therefore a bit complacent I think, where I was consistently treated like a bit of a nuisance or a hypochondriac, and where they failed to pick up my symptoms of inflammatory arthritis and overlooked the fact that I needed a hip replacement, despite my regular visits complaining about groin and leg pain... I'm now at a much larger urban practice, where I can always get at least a phone consultation the same day, where the new GP picked up my need for hip replacement on my first visit, where he has not hesitated to refer me to both orthopaedic surgery and rheumatology, and to re-refer me when I've wanted a second opinion, and where I have had no problem getting any prescription I have needed...
Good to hear that things have improved greatly for you.
I haven't ruled out changing GPs once this little episode is over, thought I'd pay for a consultation to try and gain a little more knowledge first though...I certainly can't afford to pay private on a regular basis anyway. Like yours, the new practice I'm thinking of is a larger more urban one.
Yep, I think the term "complacent" pretty much sums up the attitude of both of the GPs who've been treating this infection.
I hope you get it sorted, wishbone... And by the way, I have been wondering today... Could your bladder be *inflamed* rather than infected, since it doesn't seem to be responding to anti-bs? I am aware that I can get an inflammatory response in all sorts of parts of my body when I'm flaring, including sometimes my bladder...
I don't think it's inflammation, unless you can have it without pain or discomfort? In fact, I wasn't having any symptoms at all in the beginning, they only started straight after I finished the first course of antibiotics, which seems a bit odd as they are supposed to stop the infection. This isn't the first time I've had a UTI without obvious symptoms, and one or two doctors in the past have told me that they are best left alone if I'm not having any symptoms. I mentioned this to my GP and asked if this one may have been best left alone, but unsurprisingly, failed to get much of a response.
I'm prone to getting UTIs because I have poor bladder tone so have to self catheterise every time I need to urinate. From what I can gather, the infections I get are not so much caused by transferring bacteria into my body via a catheter, though obviously this can happen, but it's the natural bacteria in my body that are the main problem. Think I usually get the same e.coli type bug which has become resistant to trimethoprim and amoxicillin.
At the minute this current UTI seems to be a low level infection as my symptoms are slight. Obviously if things begin to get worse and I start getting feverish or running a temperature, then I need to contact my GP straight away. Goes without saying that I also need to have a serious chat with my urologist when I see him.
Was going to put this thread to bed, which is where I should be at this ungodly hour, but thought you'd be interested and pleased to know that my rheumatologist phoned yesterday to make sure I knew that my latest urine sample showed the infection is still present. I don't think that was the only reason as she could have had a nurse phone me...think she could see that I was a bit stressed by it all when I saw her last week. She was pleased to hear that I'd been in touch with urology. We also touched on other issues, including the pros & cons of going on long term antibiotics, which is something I'm very reluctant about doing, but may be unavoidable. Will have to wait and see what happens when I go to urology. I was mistaken in thinking that LTA could have an adverse effect on my lungs, she said the reason my chest consultant advised against it is because of developing antibiotic resistance, which is something that's been a concern of mine for some time.
After my GP issues, it's very reassuring when a consultant can take the time and trouble to make sure I'm aware of any issues and to see if I'm ok. I've always been happy with my rheumy team.
Seems like my expectations weren't too high after all!
I realise this hasn't been the easiest of subjects, so many thanks for taking the time and trouble to listen and respond to my ramblings. It's been much appreciated.
That's great! I don't for a moment buy into the myth that 'the NHS is just like this now'. It isn't. Most of the NHS is still extremely good, and bits of it are truly excellent. Sounds like your consultant is one of the 'truly excellent' bits! If anyone is unlucky enough to get bad treatment more than once, you've got a duff doctor, and it's time to change!
I think GPs are there as gatekeepers to stop you accessing treatment, rather than helping you to get it. If you don't need to go to the GP for years, it is not until you do that you realise how difficult it all is.
I read somewhere on a newspaper blog on the NHS, a GP saying that it cost his surgery £150 to refer a patient and that he had to decide who to refer according to NHS guidelines. If somebody complained about not being referred, he printed the guidelines out to let them know why. He said he could not possibly refer everybody who expected to be referred or indeed needed to be referred. Therefore, it is a system of rationing and only the worst people get treated.
I think you would mark your card just by moving to another surgery without a reason like you have moved home and they would be awkward with an older person who they thought needed a lot of visits or treatment. They only seem to want people who only visit once a year or not at all.
I just think in your case that it would be best to plough on and get your surgery done asap. Maybe the GP is trying to delay or block it. (I sometimes wonder if their receptionists go on a course on how to be obstructive.) I think in your case it would be well worth while trying to get an effective antibiotic from a private GP. You could challenge your own GP or make a complaint but I would be concerned about having an untreated infection during that time and even if you succeeded in getting the antibiotic you need from your NHS GP, it would be a pyrrhic victory if your infection delayed your surgery or failed to clear up.
Even though I've had RD for 13 years and a bladder condition, which has been the root cause of most of the complications I've experienced, for the last 3 years. It is only since having sepsis that I've had to pay regular visits to my GP, prior to that I can't remember when I last saw a GP. I can tell you something though - it's been a real eye opener for me! Has it always been like this or is it due to more recent government meddling and restructuring, combined with the obvious lack of funds? One thing I never liked from the off, is when this current mob running the country announced that GPs had to start running their own budget, thus IMO, treating the public service they provide more like a private business. It certainly don't require rocket science to work out that this was never going to be a good thing. The more I think about it the more I'm coming to believe that this is part of a government ploy to force people go private. Apologies to those who think politics should have no part in this forum, but in all honesty I really can't see how it can be avoided.
Yep, it has crossed my mind about going to another surgery and being asked why I wanted to leave my current practice. It could be a little akward to say the least. So as you say, it might be best to just to plough on with things.
Regarding this infection, I'm not that clued up about antibiotic resistance, although I'm well aware that it has already become a serious problem with some patients. So it's fast becoming a big concern that the bug I have may have become resistant and might not clear up, meaning that I may have to go on long term antibiotics to try and keep it under control with the added problems that can cause me. Hope I'm worrying unnecessarily here and there are still other antibiotics in the cupboard that will kill it stone dead.....
Yes, in my experience, in has always been like this. I have been with my current practice 25 years and the previous one 7 years. I recently had online access to my medical records and I could see that I have had an average of one appt per year for 25 years. Five of those appts were two years ago when I was trying to get a quick referral for sudden onset symptoms which turned out to be RA. They would not give me an urgent referral on the grounds that it was not RA (but old age) and I would have to wait like everybody else. They knew damn well what it was but they just wanted me to pay. I did pay to see a rheumatologist but he just messed around, thinking I must be a lady wot lunched.
I have never received satisfactory treatment from the GP - always a fob off. Since September, I have been three times and there was a clear indication that I had reached my limit, when I had to see a medical student. Prior to that I had been 12 months earlier re the RA.
In September I went to see if I could get a referral about my bunions/arthritis in my feet for an operation and had found the name of a surgeon who did this with keyhole surgery, out of my area. The GP told me he worked at a private London hospital and I could go there. I said I wanted to see him on the NHS - so the GP did the referral letter and there is no sign yet of an appt. The hospital said I was not a priority and the projected wait was 9 months. I have had arthritis in my feet for 42 years since age 25 and it has always been deemed not bad enough and then too bad for treatment.
In November, I went because the rheumatologist told me to go to the GP to get the rash on my feet diagnosed as I thought it was psoriasis. The GP said it was athlete's foot but the Canesten he prescribed did not work. I tried Oregano oil which did not work and the rash was awful. Oregano oil is powerful and will kill anything. After three months, I tried an Oregano oil oral supplement. The rash went after two weeks but it is not clear what the rash is and whether it just went on its own. I suppose if they admit it is psoriasis, they might have to spend some money and do some work.
Last month, I had the episode with coughing blood/back pain after taking the RA drug which I stopped. I was made to feel like a bloody nuisance.
Over the years, I have had a few issues like osteoporosis but the GP would not do a bone scan because I was not a risk when in fact I had several risk issues, and when I eventually got the scan I had severe osteoporosis. I had to pay for an MRI scan because of back pain because I was not a priority but other "younger" people were.
So, yes, it has been like this for a long time. It has got worse in terms of getting an appt because there are not enough GPs. They keep leaving at my surgery and they nearly all work part-time, and then work privately the rest of the time. I don't know how much impact the recent budget holding changes have had but I don't think very much.
I think it is a case of whoever they can push to pay, they will, and it always has been. In my surgery, I never see any older people and I assume that as the surgery is in an affluent part of town, they all pay privately. I see a lot of pregnant women, women with small children and young girls. They think the rest of us are loaded.
In summary, I think I can fairly say that a health service is just not available to some of us. I could make this more detailed to reinforce my point but it gets tedious. The previous practice was just the same - I had endometriosis and was told to pay privately, as I had done for years previously, on the grounds that "it would not break the bank". I can see from reading a lot of people's posts on here that they are just banging their heads against a brick wall trying to get NHS treatment. I feel my sanity is worth a lot and if I can find the money then I will just pay.
Crikey, that little lot sure puts my issues into perspective. The area I live in is far from affluent, so we are not put under anywhere near the amount of pressure to go private as you are.
So, at least it appears that I'm not in a small minority of cases that have these sort of issues as previously thought. I can now appreciate how things are in general and put more effort into chasing things up etc. Not that it's right by any means, but if that's how things are with the NHS then so be it. If however, I continue to be unhappy with the treatment my GP is giving then I will pay to see someone, if only to find out if the type of treatment I'm having is right and proper. I sometimes wonder if they simply don't know how to treat someone like me who's not a straightforward case.
I would keep an eye on the infection and either force your GP to give you a suitable antibiotic or get one from a private GP. It is not like having to pay out for tests or surgery.
I'm relieved really that I now know the supposed allergy I have had all these years is actually a viral infection. I paid for allergy tests which were all negative. I've been pleased with the NHS rheumatologist and hospital but it is the first time I have had any satisfaction from the NHS, and it was no thanks to the GP surgery. Unfortunately, I don't think there is much they can do now and I'll have to plough on with my herbal remedies and electro acupuncture.
It's in the hands of urology now....I phoned and explained the situation to the urology nurse last friday. She said as soon as I finish the nitrofurantoin I must take a urine sample into my GP surgery next tuesday and ask them to send it off to the lab. She will be contacting the lab to inform them that the nitrofurantoin is not working and they need to try something else. She's also going to speak with one of the urologists. I have to phone her a week thursday to see what the next step is.
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If anyone is unlucky enough to get bad treatment more than once, you've got a duff doctor, and it's time to change!
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