Incorrect Hospital Records

[LottieB36]

Hi, I’ve been having some problems with the respiratory team and requested a copy of my hospital records, which I’ve received. After going through them, there’s lots of information missing and details which are incorrect. I’m a severe asthmatic, and the consultant has now noted “no definitive diagnosis for asthma” based on normal spirometry which is always carried out when I’m maxed out on nebs and steroids and normal feno. I have demonstrated >20% variability in peak flow readings, have presented with wheeze, chest tightness, coughing, shortness of breath, there are ct scans and X-rays which note asthma, consistent with asthma etc and responded to medication when it was first initiated by my GP hence my original asthma diagnosis since childhood. I was well controlled until I became severe about 8 years ago following pneumonia and meds have been maxed, colonised with psuedomonas, nebulised colomycin, steroids, salbutamol and atrovent, seretide inhaler, montelukast, doxycycline (replaced azithromycin), fexofenadene etc etc - had previous treatment with bricanyl 24/7 infusion and theophylline but had to stop due to heart rate (medication did help symptoms though). If any doubt about diagnosis surely should be addressed before initiating treatment with high dose steroids for 2 1/2 years and other meds which also have serious side effects. Nobody wants to take medication unnecessarily. With regards to diagnosis I’ve previously been told there’s not one objective test that diagnoses asthma and diagnosis should be based on history, clinical judgement and response to medication. This isn’t the first time this has happened and my records have not been corrected, should I write again to ask for them to be corrected or do I just go to PALS?

[Homely2 Administrator]

I think it is not that unusual for a consultant to fail to accept that you have asthma.

I was only diagnosed with asthma a couple of years ago and am presently going through my fourth diagnosis, I have been formally diagnosed three times with asthma. Each medic diagnoses a different way and they all refuse to accept the results of tests commissioned by a predecessor.

I personally would not bother complaining, I would more simply see if you can correct the records and work out how you can get moved to a consultant, who you find helpful.

[My_fairy]

I am not sure how these consultants don’t want to listen to the patients.. if asthma is affecting your everyday life then it’s definite asthma diagnosis because they should look at functional capacity… also if you have atopy it’s confirmed…. I don’t know if you are under secondary or tertiary care depending on you could get a CPET it gives a lot of information to the consultant … also repeat spirometry as you said is more than 20% but they also need to look at baseline and predicted values it takes them a good amount of time around 4-6 months to accomplish this… they should do asthma control questionnaire and other tests please get advice from asthma uk nurses and finding the right consultant is very important…

[LottieB36 in reply to My_fairy]

I’m under secondary care - I asked them to refer me to a tertiary centre and was told it’s pointless they can’t do anything differently to us 🤯 which I know isn’t true! one of my consultants trained at RBH 🙈

[My_fairy in reply to LottieB36]

You should ask your GP they are better at referring if secondary isn’t helping that’s what happened in my daughters case … she was so bad and they didn’t even follow the NICE guidelines afterwards when they realise it’s their neglect they start putting on patients … you can always get help from GP they should refer where you suggest to them.. they are overall responsible for your health as a general practice hope it helps and you get the right diagnosis …

[peege]

I'd write to them mentioning you're sending copies to PALS

[Poobah]

There are guidelines about rectifying inaccuracies in one's records. This is pertinent to NHS England and sets out the guidance for the patient and healthcare professionals. transform.england.nhs.uk/in...

[My_fairy in reply to Poobah]

Thanks I will look into it.

[LottieB36]

thank you

[Patk1]

My approach would be to email them with cc to people involved in Yr care - it's a legal & binding document.perhaps also contact pals,if u wish x