I read your posts and sometimes respond but one thing was bugging me, how many of you have access to pulmonary specialists while I was effectively written-off by the DRI.
This week I see my GP to hand over the letter from DVLA saying I am safe to drive (after sleep apnoea diagnosis) AND to demand a referral to a pulmonary specialist (but NOT at DRI - they might have made entertaining TV but, in my experience, nit so good at patient care).
Without your comments, notes and responses I guess id just carry on muddling through ... not helped by nearly two weeks of being sat on by my own personal Sumo Wrestler yet besides the really poor chest no other signs to suggest an infection, really quite odd because my chest says its infected but sats & other parts say not?
I wonder if the sleep apnoea and COPD blur the edges? Read about sputum tests -never, ever had one and, until I found this site, didn't know they existed!
Quite looking forward to the GP meeting and sorting "stuff" out!
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y_not
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I know how hard it is to use energy you no longer have, to fight for your god given rights to the proper medical care and attention you deserve but you really must insist on all of the treatment you should have been offered from the first stage of diagnosis. Remember there are plenty of us here if you need any questions answered or just need some where to vent your frustration. No matter what keep your chin up x
Diagnosed four years back, thrown out of DRI for, claimed, "missing ONE appointment (which I didn't), two years later tested by an "auxiliary" and told I no longer had COPD but a restrictive issue. I thanked her for curing me and left!
Then in January, they decided to reassess me and found a slight improvement (53% improved to 56%).
I'm not a big fan of our current NHS but I have to give them credit for saving my (step)son's life after his motorbike accident ... QMC did a fantastic job but (once again) DRI let him down!
I use my own spirometer, spO2, blood pressure & temperature monitoring because no one else seems bothered!
I have to say my respiratory nurse is great, always available, listens, gives me a kick up the bum, the only thing is no one seems able to tell me what to do other than exercise which I get but it's the day to day stuff that I don't get. Am I tired because of copd or am I just lazy? is it the steroids making me sleepless or anxiety. This is the stuff that plays havoc with my head,,,,,,,, I know it's the type of illness it is and no one has the same symptoms but it's the not knowing what is the illness and what I can do to change things. I want my fev1 score to be better so other than exercise what can I do to improve. This is the stuff that drives me bonkers as I am a person who needs to know stuff. Moan, moan moan lol!
This could be me talking diesel - I am astonished at how I can let time slip by without buckling down to do something physical. There are other issues besides exercise and diet, but I might as well be talking to myself when I ask questions from the medical profession, which is why this forum is a life saver. Nurse once a year - checks spirometry, and that I am using the puffers correctly, tells me that at £30..00 each I am using too much Salamol - last time she gave me a sputum container which had someone else's name and details on. I really do feel guilty enough about having smoked without need to rub it in. If I had not been lucky enough to find HU with all you wonderful and knowledgeable people I'd be going spare.
I used to feel guilty about having a self-inflicted illness BUT, when someone told me a few days ago that a pack of cigs is almost £8 I remembered how much extra tax I gave the government whilst smoking ... now I just want the refund in the form of advice, assistance and a bit of treatment occasionally!
Totally agree that without this site we would be limited to the USA sites where things are very different!
You are so right y_not. I had not thought of it, but now I do after reading your reply. Thankyou for the reminder.
Tell me what is limiting about the USA sites, if you have time? There are many Americans on here too aren't there. I wonder how they feel about it. I bet they are jolly glad they found HU.
Jennifer, I mean no disrespect of our American cousins; simply that, because they don't have the NHS (instead rely on having to pay or insure) seems to impact how people respond to COPD.
This seems to sometimes slant the comments more towards cost v benefits and I find some comments quite disturbing when people can't access treatment simply because they can't afford it.
I know you don't. I never thought you did. I just wanted an idea of what goes on in an American Forum. It upsets me that even here the NHS has dire limitations. Many people say their medication has been substituted with a cheaper one - I have been told I am using one too much and had the prices quoted at me, so yes I agree wholeheartedly this is the way it seems to be here as well - post code I think here.
Hi Y not; I recognise the need to know but with the questions you ask, I don't know that a specialist would help you as much as Nurse or Physio led pulmonary rehabilitation. These are really good; there is usually an educative hour about many aspects of the conditions & then exercises. Usually run twice a week for 6-8 weeks. Brilliant. x
Hi scorpiolass, before being dumped by DRI I did do the PE course at the London Rd community hospital (Derby), it was they who suggested Sleep Apnoea - but failed to diagnose it ... nearly three years later the symptoms were recognised by a locum GP and the rest is history.
The course was great and very helpful but DRI failed to meet the standard set by the PR team!
I must be one of the lucky ones, apart from the first idiot doctor who sent me home from hospital and failed to tell me I had Emphysema, my treatment has been brilliant. Sometimes to the extent I wish they would leave me alone, regular Consultant, lung function, nutritionist, CT's, blood test and visits from my respiratory nurses. I don't have to go via my GP which is just as well because you can't get pass Hilter on the reception. I thank my lucky stars every day for the help I get.
Have to agree that, within the NHS there are some outstandingly brilliant people - not all are poor ... just seems that, unless I shout, I end up with the poor ones!
Yeah it is a disgrace. Not that they get much change out of me, since a receptionist told me I was to late for the Pneumonia jab in April so I had to wait until the October, June I was admitted to hospital with double Pneumonia which resulted in 3 months off work.
Velvet I should imagine the receptionists are only following instructions issued from the practise manager and probably doctor led. They don't make arbitrary decisions like this on their own - they haven't got the power.
When I worked in the DWP contact centre we would sometimes have to call clients back. We were told we were not allowed to talk to anyone else about it because of the Data Protection Act. Most people were fine but the number of times I had people getting arsey with me demanding to know what it was about. More than 1 person slammed the phone down on me! They probably moaned on their own sites about me... x
When you phone our surgery and ask for an appointment, the receptionist immediately what is wrong with you. This shouldn't be done, they then tell you they haven't got an appointment for days. I tell them it is an emergency, as it is, as we all know, and ask for an appointment on that day or l will request a home visit.
Why is it such a battle to see your GP, when you are Ill...and not a week later as l could be in hospital by then.
The reseptionist should only ask what is wrong if you are asking for the on call dr any other appointment they shouldn't ask. I phoned for appointment once and was told there wasn't any. And I said well I will struggle with my breathing till tomorrow and she said the practice manager was just putting up more appointments so I got one.
I am like Kim. Very lucky. I was diagnosed with Bronchiectasis and COPD by fluke. Long story short... I needed a chest CT scan and the Bronchiectasis was detected. Once I was well enough I was sent for lung function test at my GP's. The results led to a referral to a Consultant and he requested full tests at the hospital clinic. These were used to confirm the presence of COPD and was given repeat 3 mth appointments with the Consultant and a selection of medication. The meds were prescribed monthly by the GP and I got along fine.
Eventually I had an exasibation and was whisked off to hosp at a crazy hour. The Consultant at this hospital got me well again but thought that I could have undiagnosed SA. This caused my referral to Dr Kinnear at QMC (in the new building). He diagnosed severe Sleep Apnea. 500+ apnias per night. I was given a CPAP machine for 2x 3 monthly trials but I could not get on with it.
I have a regular domiciliary pulmonary nurse specialist visit me and does my bloods etc. I have her mobile incase I need her. She arranged for a domiciliary Respiratory Physio to visit about three times to teach me exercises.
The only time I visit the hospital now is when I need to be admitted. I have rescue meds for self diagnosed infections and nebuliser meds for when I need those.
I hope this gives you a fuller picture Y not.
Regards Rib
H I am very high moderate and just have an annual review where I see the nurse. I have done PR but have never been sent to a specialist. I am just left to get on with it on my own. x
I'd like that. Thankyou. Just the main meal please....unless you have rhubarb tart?
Mmmmmm...I like Horseradish and Colmans mustard, and lovely rich gravy with the Yorkshires....May I please have the bits from round the edge of the tin?
Tee - you have quite put me off the mackerel....bad girl.
I am going to grill it with lemon, salt, and black pepper and a bit of chopped chilli and parsley, and for pudding I got some of last years plums out and will have them stewed with honey and yoghurt and do Tinker Tailor with the stones.....
Raining heavily here now too, but no thunder and lightning - Very very frightening......
Living in a bungalow I can no longer take refuge under the stairs.
Sorry you don't like thunder and lightning, I have to admit I love it. The more dramatic, the better. If you can quote Bohemian Rhapsody in the middle of a storm, you are braver than you think!!
I think only people who have problems see a consultant. I was fine with my medication went for years with just yearly check ups. Until 3 years a go I started getting infection after infection and none of my medication was helping me was referred to resp clinic had ct scan found out I had a small amount of bronchiectasis too. Now been referred to immunologist due to low immune system. Breathing still not any better. And also recently been dx with 2 Autoimmune disorders. Never away from clinics due to this such is life. Just do what I can when I can
I had 5 exacerbations last year...two requiring hospitalisation, my GP refused a referal on the ground l hadn't had enough problems to warrant one. Despite me giving him both barrels of a Velvet Rant.
My review is due shortly, l know l have deteriorated,... I am going to make an appointment with him, if he refuses again, l will shove my results up his...where the Sun doesn't shine,....l have always wanted a ride in a police car 😁😁
What even after you were in hospital you didn't get a follow up appointment with the consultant at the resp clinic. That's not right. I don't know why. But it depends on what part of the country you live in as to the treatment you get. It's only April and I have seen a consultant twice and I have another app in June if I have seen the immunologist by then xx
They were more bothered about my heart, than my lungs...a case of oh you have COPD and Asthma
I was referred to a cardiac consultant, who has been excellent, and after loads of specialised investigations he has diagnosed cardiac heart disease, furring of the arteries in my heart and angina....he is still running tests.
I have mentioned about seeing a Respiratory consultant to him but he just says see your GP.
Well if the heart consultant thought it was nessesery for you to see a resp consultant he would referre you. If he is such a good consultant. And problems with your heart can affect your breathing. It not only your GP who can referre you if your consultant thought you needed to see a resp consultant he should referre you. Really l would be quite happy if I didn't have to see all these consultant. And could just deal with my GP. Because having to see a consultant means you are getting worse
Hi velvet, I agree with you. You do have the right to be referred to a resp consultant. And you should be referred to one if your conditions are getting worse. Everyone has that right. And it is disgusting that everyone is treated differently. I live in Scotland and I can't fault the service I get. I see 2 different consultants at the moment and am waiting to see another one. But myself I think there is a connection with all my conditions and trying to explain that to them isn't easy. You seem to be a person who doesn't take any prisoners so I think you will get what you want in the end. And I hope you do take care xx
Do it velvet. We are regarded as a nuisance and they want us all out of the way s.a.p......and as for disagreeing with the GP.............gosh you are lucky you have not been blacklisted yet.
Velvet tell him firmly that you are demanding a second opinion. Remind him that under the NICE guidelines he can't refuse you. If he does, say you are going to report him to the local NHS Authority as he is breaching the rules. x
I only saw a consultant after I was admitted to hospital with a cough, breathlessness and chest pain. First they decided I had a pulmonary embolism so injections into my stomach, then pleurisy so ABs , then asthma so nebs and steroids so the ABs were stopped. Only later did they say I had had double pneumonia after I was sent home and struggled back to work , as no work no pay in my job then.
That was over twenty years ago and the rest is history...continual exacerbations of asthma/ COPD .....with the comment ' well you did used to smoke'. Hmm 40 years ago
I was signed off from my consultant ages ago ...coincidently the same time as a friend of mine who had the previous appointment...we thought he was number crunching until he retired .
Take care and I hope you get some answers....thank goodness for this site ..it has taught me to be persistent and not to worry about making a fuss anymore .
Hi, is DRI the name of a hospital? Just wondered as my hospital at Doncaster is abbreviated to that. I hope you get some answers when you see your G P , it's terrible when you have to fight for what should automatically be yours and available.
I have only once seen copd specialist in 10 years all I ever see is gp they don't seem to know too much just that its severe well I think I know that am now waiting results of blood test and chest X-ray as I have severe pain in both sides of lower back and front really getting me down now but it's took 6 weeks and 4 different doctors to get this far
I'm not surprised Notebad people who live in Scotland also get free prescriptions. Pre Gordon Brown consultants were allowed to refer now due to GP's having a budget it is down to them this works quite well until you get some hypochondriac comes along and uses up the budget.
Gp's are supposed to manage our condition but some think they are God and it's people like Velvet who slip under the net.
Hi onamission. It is disgraceful how we are all treated differently. It is one NHS service and we should all be treated the same. Were you live should not come in to it. I am actually English and was born in Leeds. And had to move when I was 10 years old because of my dads job. He had a choice between Scotland or Ireland. I for one am glad he chose Scotland. And the free prescriptions in Scotland might change if the SNP don't get back in
we should all be treated the same we have a situation with the Welsh assembly they are kicking off because they might loose there nearest A&E its in a English hospital, they should give up the free prescription and build a hospital of there own.
As for GP receptionist they are not medically trained and you do not have to tell them what is wrong.
It doesn't bother me if the receptionist asks what it is about if you are asking for the on call dr thats so the GP knows what he is dealing with. At my surgery if you ask to speak to the on call dr you give a brief discription and you get a phone call back from the GP no advice from receptionist. It would bother me if the receptionist ask what I wanted to see dr for. For just a normal appointment.
My GP surgery runs a drop in urgent care clinic and when it first opened you had to tell the receptionist in front of everyone in the room what was wrong with you.....quite a few interesting answers and sideways looks !
Now you have to write down on a form the reason for your visit, so only the receptionist knows. Mind you in A and E everyone can hear what's going on , and before chemist shops had those little cubicles installed there was no privacy.
I've got very severe COPD and chronic asthma but never been referred to lung consultant. My GP and COPD nurse who does the annual spirometry review won't even tell me if I have Chronic bronchitis or emphysema despite numerous requests. Much like Velvet I'm fobbed off with excuses that my condition is stable, despite my FEV1 falling to 26% from 44% over a decade, and exhibiting many signs of Brochiecstasis. It's all about cost saving as usual.
I have IPF, for which I am on oxygen👃. I live near Southampton and use Southampton General Hospital. I have access to a IPF consultant🕵 (see 3 monthly, with Pulmonary function test just before), a specialist ILD nurse👼 (available via phone and email 4 days a week) and community oxygen team👼🏻👼🏼( currently being seen every 6 weeks, as I am borderline needing oxygen full time). This appears to match exactly the best practice guidelines.
There have been some problems with cancelled appointments 🚷 due to the Junior Doctors strike. Hospital admin sent a letter saying I need to be to see my GP and get new referral.👭👬👫 🔚. Complained to head of complaints by email, copying in ILD nurse. Next working day ILD nurse called just after 9am, to say ignore letter, Admin team have really messed up. The ILD nurse and consultant have "made arrangements" to see me sooner rather than later. 🔜☑️ This of course may have had something to do with having 4 extra guests for 'dinner', first responder, paramedic and ambulance crew. 🏍🚓 🚑
Maybe it is different for IPF sufferers, but, I do feel VERY lucky to have access to this team, given what I am reading about others experiences.
Maybe, I have my rose tinted spectacles on 👓 and I am ignoring that it took from possibly from 2006 - 2015 to reach this point, going via a diagnosis of Chronic Fatigue and a feeling of wilderness. Thinking about it now CF and IPF are quiet similar, both, have "we don't know the cause" and "there is no magic potion to cure you" 💊 💉 🙂
Oops, this post has got far bigger than expected, so I will leave thoughts on receptionists, locums, scaring baby doctors (med students) and access to your GP to another time.
I hope you manage to get things sorted out, especially getting OK to drive (I am missing this terribly)
Hi Tenter, since my post I have been given the okay to drive (thankfully) and, following a recent chest infection one of the better GPO's in my practice has arranged a PR course and referred me to the Cardio-respiratory team at a (different) local hospital so I'm hopeful that I might get better treatment & monitoring that I've had over the last couple of years!
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Feeling a bit better now, thank you all.
Thank you
Pleurisy and bronchial pneumonia 
Sleep apnoea/laryngospasm
