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British Lung Foundation
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My GP concealed my Consultants diagnosis!

Many people may remember me posting that my GP and COPD nurse conspired to withhold my Consultants diagnosis from me, and I only found out by CHANCE last December when I sneaked a look at the COPD Nurses computer, and discovered I had been diagnosed with Emphysema, and Pulmonary Fibrosis! Since then my GP has de-registered me from the practice, for no other reason than I complained too much! He even reported me to the NHS Registration Department to de-register me, by saying I lived outside the boundary from the surgery, although its only 800 meters away, and I have been registered there for 7 years! Its more complex than that, as I have been contact with a number of NHS, and medical agencies, but BLF won't post my email on this website, without any explanation, when I asked them to! I would welcome any help, or suggestions, as my email is quite lengthy, and I am interested in others experiences if similar.

15 Replies
oldestnewest

I rather suspect that you are telling only one side of the story.

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I've not ever heard of a patient being de registered.

Perhaps you have already viewed these pages:

nhs.uk/common-health-questi...

nhs.uk/using-the-nhs/nhs-se...

bma.org.uk/advice/employmen...

"Removal of patients from GP lists

A good patient-doctor relationship, based on mutual respect and trust, is the cornerstone of good patient care. The removal of patients from practice lists should continue to be an exceptional and rare event, and a last resort in an impaired patient-practice relationship. When trust has irretrievably broken down, it is in the patient’s interest, just as much as that of the practice, that they should find a new practice. "

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So your consultant, GP, NHS & BLF are all part of some conspiracy against you? Sounds rather unusual.

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I am sorry but I refuse to believe the BLF would do anything that was unfair. Their reputation as far as I am concerned is beyond reproach. You make some claims that some may consider defamatory against others. The BLF is a charity to help people with lung problems. Not a platform for launching defamatory allegations against individuals or organisations. Obviously there must be something contained within your email that caused them concern. I suggest you rethink your comments.

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Hello, your experience is similar to many who complain. However the medical profession is not supposed to compromise your health treatment because of concerns raised. You can always send a private message on here if you think someone can help you that as answered your post. However I would suggest you contact NHS England with your concerns they can be contacted on line address available from PALS on NHS choices site. Good luck.

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Have just posted a lengthy explanation which I hope will be shown, but my situation is being monitored by my Parliamentary candidate, who is more expert than I in these matter, and is advising!

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Wow 😲 I have found all doctors Kind and helpful,they have a duty of care to help. You have the right to change your GP. Not sure why you would stay with a GP that kept information from you. I would feel the trust had been broken, could you please clarify why you would stay???

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I live in an area of East Kent that has a severe shortage of GP's, as they have been retiring at rate of knots, and there is probably no chance of getting transferred another practice! Besides I don't want to leave my practice, and I will not give in to bullying! There are now 8 GP's at the practice, and I have the right to be transferred to one of these, but I have written and said I no longer have any faith or confidence with my present GP, and its my right to refuse treatment from him! My GP has tried to make up spurious reasons why he no longer wants me on the practice register, which shows he knows he is in the wrong! What I am trying to do is expose this policy of not informing Consultants diagnosis to patients, and I have sent it to the Parliamentary Health Select Committee, because I believe this may be happening nationally!

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I don't think you can have meant the BLF surely.

In the UK we all gave the absolute right to view our medical records. We might have to pay for the photocopies. Most people receive a copy of letters from consultants to GPs, I cannot understand why you haven't. Pulmonary Fibrosis is quite significant news for any patient.

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My original email to the BLF was a copy of an email I had sent to others, and I didn't want to have to re type it here, so I asked the BLF to post it for me, but they haven't done so! See me latest email below, because I have now re-typed it all out, but remember, my Consultants email with my diagnosis was being deliberately withheld from me, without my knowledge! Yes, I can ask for copies of my medical records, providing I know what I want to view!

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OK, just to clarify: I am in my 77th year, and up to 5 years ago was a keen swimmer, swimming a mile every other day, then I started to get breathless, and my GP (Locum) diagnosed Swimming Induced Asthma? I used inhalers until spring 2017, when I developed a severe cough, and was referred to a Respiratory Consultant by my GP, and in the next 6 months I had CT scans, and other tests. Then in November last year the COPD nurse sent me a sterotype letter saying to make an appointment, as my Consultant had suggested another type of Inhaler. The next available appointment was on the 13th December, and when the COPD nurse went off to get one of the new inhalers, I sneaked a look at her computer screen, and saw an email from my Consultant addressed to my GP dated 3rd November, 3 days after I had seen her! When the COPD nurse returned I asked her if I could have a copy of the email, and she asked me why I wanted it? I said I think I am entitled to know what my Consultant had diagnosed me with, don't you? The COPD nurse reluctantly printed off a copy of the email for me.

When I returned home I saw that my Consultant had emailed my GP with my diagnosis of Emphysema, and Pulmonary Fibrosis, six weeks earlier, but neither my GP or the COPD nurse has thought fit to tell me! The email also had a lot of medical terms and jargon I didn't understand, so I wrote to my GP and made an official complaint! The Practice manager replied, saying with over 10,000 patients it was " too difficult to copy letters to them all", later she also wrote and confirmed that she could NOT assure me that patients would be advised of Consultants diagnosis!

I was unhappy about this, so made an appointment to see my GP, and he grew quite agitated when I asked him why my Consultants Diagnosis had been withheld from me, and said that the practice didn't have enough GP's, and could only just cope with locums! He also said he, and others had "Blown the Whistle" (his words) and raised the matter at the highest level, but got nowhere! In effect he said he didn't have enough staff to call in patients to have their Consultants diagnosis explained to them, and agree a prognosis!

I complained to the local Clinical Commissioning Group Lay Member about this concealing of Consultants diagnosis from patients, who referred me to their Risk Assessment Team, who referred me, after being referred to some Micky Mouse agency, to NHS England! They emailed me back saying "Its not uncommon for GP's to withhold Consultants diagnosis for clinical reasons! But this was not for clinical reasons, I argued: No reply.

After advice, I took it up with the Care Quality Commission, who carried out an investigation, although they made it clear they don't normally act for individual patients! They appear to have carried out an investigation at the surgery, and emailed me back saying the "Practice has denied they withhold Consultant diagnosis, and the Commission is "suitably assured the practice has listened, responded, and reflected on the incident".

So why did my GP, and the COPD nurse fail to ask me in to discuss my Consultants diagnosis, and agree a prognosis? Neither of them had any intention of informing me of my Consultants diagnosis that I had two life threatening, and incurable lung diseases! However, later it would appear my GP claimed it was my Consultant who should have explained my diagnosis to me, but she never made this on the spot when I saw her, she quite rightly, emailed it back to my GP 3 days later,for him to explain it to me, but I never learned about it until 6 weeks later, by CHANCE, when I sneaked a look at the COPD nurses computer!

When saw my Consultant in October, she said she would only be able to see me about once every 9 months, to a year, so if my GP expected me to wait this long before learning of my diagnosis, then he is wrong, wrong, wrong! The Consultant acted professionally after my GP wrote to her, referring me to her, and she replied back to him, which is normal professional etiquette. I am a retired building surveyor, and had worked for 2 firms of Charted Surveyors, and had a client asked me to carry out a building survey, and I found what I suspected may be a structural fault, I would suggest the matter be referred to a Structural Engineer for an expert opinion. If this was agreed I would instruct a structural engineer, who would reply back to me with his/her findings (diagnosis). I would then call in my client, and do my best to explain the findings in lay mans terms to my client, and agree what the next step would be (a prognosis). But this didn't happen, and my GP and COPD nurse were conspiring to withhold my Consultants diagnosis from me, and instead were going to just assume I would be content with being told I have COPD!

I have met many other people since, and seen some on the BLF website, who similarly have no idea what their lung disease is, and have been just been told they have COPD. This is not good enough, we all have a right to know if we have life threatening incurable lung diseases, and my GP failed to do this. Instead when he was investigated, and he denied concealing Consultants diagnosis from patients, despite the fact I have it in writing from the Practice manager this happens, because to copy Consultants diagnosis would be too difficult! Also, when I tried to raise this at the Patients Participation Group the Practice manager blocked it, why?

Finally, why has my GP decided to de-register me on the grounds I live outside the practice boundary, at least that is what he informed the NHS Registration Department, who wrote to me. I have been registered at the practice for 7 years, and love under half a mile away! A jogger could do this in 5 or 6 minutes, and I used to walk it in about 15. I am aware of other patients who live over twice this distance away from the practice, and my chemist even further! No, my GP has been caught out on unprofessional conduct, and he didn't expect anyone to find out he has a policy of withholding Consultants diagnosis from patients, and in collusion with the COPD nurse, was just going to tell them they have COPD!

I have informed the Clinical Commissioning Group, and my GP I have absolutely NO intention of finding another GP practice, which my GP has given me until the 29th November to do, and if he fails to authorise my repeat prescription for my inhaler, and other lung (& heart) drugs after this date, then he will be responsible for the consequences! All the above was sent to the BLF in an email which I asked them to post on this website, but they failed to do so! I would be interested in others views, but do not doubt my integrity, or my word please, because this is all true, and I have pages, and pages of correspondence to back it up!

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Well you appear to be stuck between a rock and a hard place on this issue and it won't be the first or last time that the Nhs has been found wanting when it comes too the disclosure of personal medical information.Likewise health unlocked and the BLF have their own agenda and are certainly not holier than thou as others seem to imply and sometimes i feel they are a bit spineless and reluctant to rock the boat,though i do understand they would not have the time or expertise to investigate your claims and that they have a policy of not naming and shaming and they would probably fear litigation against them so you will have to persevere with the tools to hand,notably your local political representatives in the guise of councillors and your MP and as stated before if your case is sound and factual the press media.

Good luck with all that but in the meantime try to concentrate in obtaining guidance,treatment and care with your diagnosed lung conditions.

Ski's and Scruff's

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You said - "I have informed the Clinical Commissioning Group, and my GP I have absolutely NO intention of finding another GP practice, which my GP has given me until the 29th November to do, and if he fails to authorise my repeat prescription for my inhaler, and other lung (& heart) drugs after this date, then he will be responsible for the consequences!" This is nonsense - it is yourself who would be responsible for the consequences.

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I have stood up to injustice, and bullying all my life, and refuse to be bullied into moving to another GP Practice, even if there is one locally willing to have me. I have caught my GP and COPD nurse out deceiving patients, and they don't like it! Why else would my GP try and expel me from his Practice? No I will stay and fight! Remember COPD is a condition, and you have a right to know, and to ask what type of lung disease you have, in order to be able to give your informed consent to your treatment!

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So you will be without a G.P. and will have to use an non-NHS Doctor who will provide you with private prescriptions?

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