I am new here! Five years ago I was diagnosed by a GP Locum as having "Swimming Induced Asthma" having been swimming a mile every other day for over 20 years! I was given inhalers, and last year I started coughing up blood, so my GP sent me for a CT scan, and referred me to a Respiratory Consultant, who I saw after six months! The Consultant didn't give me a diagnosis on the spot, but some six weeks later I was asked to see my GP's COPD Nurse, who said my Consultant had suggested a different inhaler. When she went off to get one, I sneaked a look at her computer screen, and saw an email from my Consultant addressed to my GP some 6 weeks earlier, 3 days after I had seen her which said I had Emphysema and Pulmonary Fibrosis! This shocked me, as neither my GP nor the COPD nurse had said I had this diagnosis from my Consultant, and I later found out they had no intention of informing me! I challenged my GP and asked him why was my Consultants Diagnosis deliberately withheld from me, and he grew quite agitated, and said he didn't have any GP's, and was only just coping with Locums, and couldn't call COPD patients in to have their Consultants diagnosis explained to them, and their prognosis! I have made any amount of complaints to at least 6 different NHS/agencies, and got nowhere, and it seems this practice may be common! I now know what will kill me, but don't know when! I have no faith or confidence in my GP or the COPD nurse, and do not know who to turn to for help, has anyone else experienced this unacceptable, unprofessional treatment from their GP?
Withholding of Consultants diagnosis ... - Lung Conditions C...
Withholding of Consultants diagnosis from patients by GP!
Not only is that behaviour unprofessional, it is a gross dereliction of duty to the patient. His excuses are nonsense. You don’t say if you have gone through the official complaint process or if you have informed the practice manager that you intent to. This should be your first step. It does tend to concentratetheir minds.
I also suggest that you contact your consultant and inform them that the GP has failed to pass this information on to you. They really don’t like it!
I always insist that copies of all communications between the consultant and my GP are copied to me from the consultant. They should also be on the patient access on the computer in the practice and you should be able to read them from home.
You are entitled to this information. It is your health which is important, not the GPs inability to deal with his workload.
Apart from making a complaint to my GP, in which the Practice Manager replied saying with 10,000 patients its too difficult to pass on Consultants diagnosis to patients, I have also complained to the East Kent CCG, who made me jump through three more hoops, until I arrived at NHS England, who said its NOT uncommon for GP's to withhold Consultants diagnosis for clinical reasons, but this was NOT for clinical reasons! I have also complained to the Care Quality Commission who did investigate and who came back saying the GP practice are "reflecting" on my complaint, Duurh! I also complained to the General Medical Council who said my GP withholding my Consultants diagnosis is insufficient evidence to have him struck off their Register! I replied saying then can you at least stop him continuing with this policy? They did not answer! The same with the Royal College of GP's, who are only there to protect GP's interests, and not the public! By and large I think its because GP's are self employed, and only have a contract with the NHS that they can get away with this scandalous unprofessional behaviour, ergo Harold Shipman! The Health Ombudsman phoned me and for an hour and half I went through all this, and they said all they can do is "mediate" between the two parties, which means my GP can ignore them! Duurh! But how can my GP be stopped from concealing Consultants diagnosis from patients?
I deal directly with my consultant via her secretary and I suggest that this is the way to go. Making sure that they know that your GP witheld your diagnosis from you.. if you can bear it get back to NHS England and insist that they handle your complaint properly as the GP was not witholding for clinical reasons and also ask the CQC what the outcome of the practice "reflections' are. They are all a disgrace.
My Consultant said she would only be able to see me every 9 months to a year! Yes, after my complaint I did receive a copy of her letter to my GP with my diagnosis, but who in their right mind wants to receive a copy of a highly technical diagnosis from their Consultant out of the blue, showing you have two life threatening, and incurable lung diseases?
It’s all not good. You sound livid and you have every right to be! I’m sorry that I cannot suggest any more that will help you.
I agree about getting copies of letters but, whilst I also have extended access to my GP medical record, the letters and consultations are not available to me on screen.
Mine are.
It’s very helpful when you can see exactly what’s being said. I can see test results, repeat prescriptions, and a consultation summary - that’s all.
Yes I have sorry to say it’s common ,I have been told I have plural thickening but not by the go the nurse ,now they say I don’t ,then told I had bronchiatasis then another doctor said I didn’t so I just give up trying to find the truth
Take a care
Dorothy
I think your consultant should have had you in for a return consultation to give you the diagnosis themself and since you have both COPD and Pulmonary Fibrosis a return visit after being on the new medicine after 6 months, a referral to a pulmonary rehabilitation programme for patient education and support. Definitely push for the latter and ask for a referral back to specialist for the diagnosis and explanation.
Also check with BLF helpline to get advice on what they would advise in your situation.
Take good care and hope all becomes more manageable for you.
Bkin
I have completed a Respiratory rehab course, and am now only dealing directly with my Consultant, who is aware my GP withheld her diagnosis. She is still professionally responding to my GP but copying me in by letter! I have tried to get someone to explain the diagnosis to me, but BLF don't have a nurse at present, so have just emailed Action for Pulmonary Fibrosis who they referred me to. My Consultant has referred me for another CT scan, which will be in a couple of weeks, and I provided a lung sputum sample at her request. I have written to my GP and said I am refusing all further treatment from him, and the COPD nurse, as I have no faith, or confidence in either them!
I would say really its your consultant who should explain your diagnosis the specialist consultant is the one who understands the results from CT scan (or should) the GP and nurse are not really qualified to interpret the scan results. As you are still under the consultant ask the consultant to explain. The letter sent to the GP should have said something along the lines, " I have explained the diagnosis to the patient " as well as recommending the medicines.
It is unfortunate your GP did not advise you of the CT scan results. In my experience after having a GP referral scan it is down to the patient to follow it up by making an appointment after the results are back. Its still down to the consultant to explain if you are still under the consultant in my opinion.
Best wishes for a more satisfactory relationship with your new GP and respiratory nurse.
Dreadful patient management from all of the so called health professionals
It could be the consultant thinks by attending the PR course you will have a better understanding about the diagnosis, but for sure anything you don't understand and any concerns you have about your diagnosis do ask the consultant.
After a time the consultant will refer you back to your GP so its good to take advantage of the time you have with your consultant to gain further understanding about your diagnosis.
I have discussed this argument with other professionals, and we all agree if my GP refers me to a specialist Consultant, the Consultant should reply back to my GP. My GP should then ask me in to have the Consultants diagnosis explained to me, and the prognosis (treatment) agreed, by informed consent. I am a former member of the Chartered Institute of Building with experience of working for Chartered Building Surveyors. If a client came to me for a building survey, during which I considered a building may have a structural fault, I would suggest a Structural Engineer should be engaged. If so, I would instruct a Structural Engineer to carry out a survey, and they would reply back to me. It would then be my job to explain the structural engineers report to my client, in as best a way I could in lay mans terms, so it was understood, and for me to answer any questions, and agree the way forward.
This is normal professional practice, anywhere! My GP received a diagnosis from my Consultant addressed to him by email, and both he and the COPD nurse had no intention of explaining it to me, this was quite apparent, and confirmed by the Practice Manager in a letter to me. Its outrageous unprofessionalism, high handed, and unacceptable. They think they can play God, well not with me they won't!
There are difficulties when it comes to some General Practises and more so with COPD/Emphysema treatment, when you have it. I hear you ! There are definitely some practises, needing change. If you have not had the, due to 'stress', diagnosis, and/or 'a virus', your probably doing well. I just cringe at those one's. More and more members of the public are aware of these flimsy practises, but I think it will be a long time before anyone gives these things real attention. If you have breathing difficulties, have you had the, 'well your oxygen is normal', yet ? You will !
If your do have or have had dire excruciating pain, that particular comment hurts a lot. Serious breathing difficulties, and pain/or attacks are not measured in seriousness by, nor a prognosis made, from an 'oxygen' test done, in a GP surgery, from a thing you can buy yourself from Amazon.
I have emphysema, I have been told I do not need a lung specialist - (smirk) meaning, 'No, I will not refer you to one'. (Possibly due to that annoying, 'oxygen' reading and not my pain) So I hope, I do not have anything lurking, as in your case, as I have not seen my report either. Mine was picked up by an alert radiologist. I was told however, that I have very serious Emphysema - go figure. When asked, no one knows exactly, what 'very serious' actually means...……. true story (It makes one shiver). One medical person seemed annoyed with the reference Emphysema and said, 'Its COPD', I'm like, 'Okaaaaay…..', I never did get what was going on with that.
The COPD appointments are terrible, to the effect of, 'downloading stuff from the internet'. I find my mind wandering. Not for me, I do not accept general internet paraphernalia of any interest, and I'm not allowed access to a specialist. So I've never had a professional assessment and I have noticed a marked deterioration, in my physical capabilities with the, 'COPD' (?!-Eyeroll)
I am truly hearing you and empathetic. I was taken with your final comments, I could not believe you expressed it, as I too, have wondered, what I will die of, in the end.
I thought we had rights under the data protection act to see information about ourselves. Perhaps like Littlepom, you should request to be copied in in on letters from the consultant. Disgraceful attitude from your gp. Hope you get it sorted. X
I always request copies of letters but often don't get them. Also, often can't find out the results of tests - GP surgery say they can't find them - tell me to phone hospital department, which has an answer phone and have never received a response when I have left a message. All that's available from our practice website is prescription and innoculations.
I would seriously consider taking legal advice,this is as clear a case of medical negligence i have heard in all my years,search for a solicitor who specializes in medical negligence and see if the provide a free half hour consultation as do lots of briefs on your first visit and take things from there.
Tried to contact "Action Against Medical Accidents" after being advised by the Patients Association, but found their website impossible to access! My guess is they are inundated with complaints, but my case is not an accident, its deliberate concealment of my Consultants diagnosis from me!
Thanks Redsox.
I was thinking of 'dumpton's, intial post too.
It was shocking, and brasses me off no end.
'dumpton'
There is a Hub, you can request a copy of all of those letters and copies of X-rays and test results held by NHS. There is a fee after a certain amount of paperwork, otherwise free. Try your main hospital, they will direct you to access and they will post out the relevant application forms.
We should be given a written copy of our results, at an appointment, when we request so ! For some people it is easier to read something, than listen to description. Also those appts are generally 10 minutes are they not ? Not time to recall everything. That information is not there, to be kept, solely, as though, privately owned, in some other persons inaccessible business computer screen.
Valid information, as a point of reference, as opposed to short recall.
I understand you fully, I do not trust much either, just go along with it and hope to hell it will eventually lead to the right specialist.
I have frequent appointments at the moment, due to complications of some description affecting my breathing. I have taken medication for various illnesses I felt doubt about recently and I know I missed some medication for illness I suspected I had. In fact, I shall have that confirmed soon.
I could not tell you, the true state of my lungs. I do not know how many holes in them, or which Stage Emphysema (sorry COPD) I have. I don't know if the pain and the deterioration of my physical capabilities, is measurable and in line with, the state of my lungs. I worry about it, and I have no planning ability for outcomes. I simply don't know.
Here is an update! Since I first made a complaint against my GP concealing my Consultants diagnosis from me, on the grounds he didn't have enough GP's, and was barely coping with Locums, and all the further complaints I have made to various NHS bodies, and other agencies, including the Health Ombudsman, guess what, my GP surgery now has 8 GP's! There were only 4 this time last year, so maybe something has kick started a recruitment campaign! Perhaps it was the Care Quality Commission I complained to, who carried out an investigation, and who reported back to me by saying my GP practice would be reflecting on the matter!
Bronchiectasis advice needed please :-) 
Im clear .
Do I need a specialist
Great News but can I trust them........
Diagnosis of IPF
