Health records diagnosis confusion…..

[Topgunele]

Hello everyone. Firstly thank you to everyone who replied to my previous post offering such good advice and support. I have since visited my GP and have now been referred to MH Team for help and support, waiting on appointment. I am currently fighting a chest infection which has really floored me, on steroids and antibiotics and using inhalers when needed……but what really got me when I had to visit my doctors last week for this was that my (ACOS) Asthma COPD overlap syndrome had not been recorded on the system! I was diagnosed in December 2023, the spirometry test results are on my NHS record but the nurse did not enter diagnosis on my record! Doctor didn’t seem too impressed by this, neither am I. I have since checked my NHS record and it now states ‘significant asthma’ which was entered by someone else, due to a brief questionnaire that I was sent a few days ago, not by the Nurse that originally diagnosed me. I feel that the diagnosis on my NHS record is incorrect as I was diagnosed with ACOS…..am I being unreasonable to want to query this with GP surgery?

[kev60]

hi, simple answer is YES if you feel something is wrong ask the question. Good luck. Kevin

[Topgunele in reply to kev60]

thank you. I have done an econsult this morning questioning this. My point is that going forward I believe the correct diagnosis needs to be on my record in order for me to receive the correct treatment and be included on relevant vaccination programs etc. I don’t understand why there is such a lapse attitude towards respiratory conditions? I also have Crohn’s disease but with this comes a lot of support from IBD nurses and consultants, I wonder why isn’t this the same with respiratory diseases? Why are we left to do all the research ourselves?

[MoosterMoo]

Hi, I'm so glad you've been referred and will, hopefully, get the help and support you need. I would definitely question the GP if you don't think something is right. Since my illness started 18 months ago, I've realised we have to be our own advocate. Good luck 🙂

[Topgunele]

thank you. I have done an econsult this morning questioning this. My point is that going forward I believe the correct diagnosis needs to be on my record in order for me to receive the correct treatment and be included on relevant vaccination programs etc. I don’t understand why there is such a lapse attitude towards respiratory conditions? I also have Crohn’s disease but with this comes a lot of support from IBD nurses and consultants, I wonder why isn’t this the same with respiratory diseases? Why are we left to do all the research ourselves? I am so grateful that I found the Asthma & Lung website, nothing was recommended to me by nurse. I was given diagnosis, some inhalers and nothing else. No advice, no explanation, nothing about the condition, nothing about on where to go for help or advice and I think this probably contributed to my anxiety and depression. Fear of the unknown. So I am really thankful to have this forum where others have 1st hand experience. Thank you for your support and advice

[katieoxo60 in reply to Topgunele]

I totally agree how can you get the best treatment if the diagnosis is a bit doubtful. Respiratory diseases do seem to be a bit mysterious when looking for a firm diagnosis, many other chronic illnesses are the same . I guess if a person has a broken bone its easier to confirm. Best wishes with getting a correction on your records.

[katieoxo60]

Have to say in my opinion you should query any doubts on the records especially as we are now becoming totally electronic . Just an example I am prescribed inhalers for COPD it says so on my prescription. But i feel some diagnosis conform to the illness most prevalent at time of diagnosis. There are many chronic airway diseases with similar symptoms. Good luck.

[Topgunele]

thank you Katie. I have just received a response from my GP surgery. They have now updated my NHS record with the correct diagnosis and have also apologised for confusion. I am surprised and grateful as to how quick this has been done. Just shows that questioning is worth doing, thank you