Correcting inaccuracies in consultant letter [UK]

[InitialConditions]

I'm under a rheumatologist at the moment, who's actually quite helpful. The last correspondence I got from him after a telephone review appointment contained some innaccuracies, although they weren't malicious in anyway. The letter was sent to my GP, as is standard practise.

I'm going to write to him to correct these innacuracies. Has anyone any experience of this within the NHS? Should my consultant then issue a new, revised letter, or will it be enough to ask that my letter is added to my hospital and GP records?

 

[Invisible Woman]

I have had to do this.

I wrote a polite letter to the consultant involved explaining what was wrong and why, keeping it as brief and to the point as possible. I also made sure to thank them for their time and care.

Then I waited to see what response I got. I got a reply but the GP wasn't copied in so I sent both my letter to the consultant plus reply along with a covering letter explaining that a mistake had been made and requesting that the enclosed letters be added to my GP record.

 

[Kitty]

My rheumatologist insisted that I had fibromyalgia. I may have – certainly have the pain – but I've never been diagnosed with it. She's the only who told me in all seriousness that ME and FMS are the same thing...anyway, I asked her to change it when I got to my next appointment, and she did.

 

[Barry]

My strategy, no matter in what context, is to always seek written positive confirmation of something by reply. Otherwise you could send your letter and you would never be any the wiser if it was not actioned. Or some time later if all you had was verbal reply, if there were no paperwork trail then the conversation could be denied. So either a letter back to you superseding the first one, or written confirmation that your letter is being attached as an update to the original.

 

[MeSci]

I haven't had any changes made to the multiple inaccuracies I found in my record, other than, if I remember rightly, the inclusion of my letter detailing them, which I doubt whether anyone will have time to look at in addition to the official records.

 

[DigitalDrifter]

She's the only who told me in all seriousness that ME and FMS are the same thing...anyway

ME and Fibromyalgia are certainly not the same thing. Fibromyalgia symptoms are considered inconsequential and actually improved by exercise. It can be be dangerous for an ME patient to be misdiagnosed as having Fibromyalgia (as it was in my case).

 

[bicentennial]

Has anyone any experience of this within the NHS? Should my consultant then issue a new, revised letter, or will it be enough to ask that my letter is added to my hospital and GP records?

I got it all put right in a follow-up letter at the follow-up appt with the clinic in question, when - heart in mouth - I dared to tell the lead consultant in charge of the clinic, off the record, that their junior had made a mistake which was somewhat prejudicial, so could the clinic lead please write to my GP to put the record straight.

They questioned me intelligently to get an accurate description of the misrepresented symptoms and put it in the current clinic letter. But they did not initially believe that the scan result in question was negative, not positive as stated in the previous letter. They were still looking only at the summary in the last letter.

As I had obtained a copy of the scan report in question, I was able to insist with confidence that it was negative. They could not believe it had been so wrong on record, until they checked and found I was right. I was flabbergasted too.

I had been so dismally confounded, silenced, disturbed and defeated by the inaccuracy in their junior's clinic letter, that I nearly gave up on the investigations. I nearly stopped attending the clinic. I shrank from communicating into such a warp.

So I nearly did not return. But on return for the follow-up appointment, I asked to see the clinic lead instead and to my relief this was granted, partly because the lead was in clinic on those weekdays.

Then I explained how the previous clinic letter was inaccurate, and left my GP thinking I was not compliant because I had declined the medication therr junior had prescribed (a medication I did not need and that was contra-indicated).

This was more dangerous than I dared say because medical non-compliance is grounds for mandatory safeguarding which can make enforceable, overloading plans upon a misunderstanding. So I dared to speak up and speak out

I also dared to return and insist because the investigation mattered a lot.

I explained that the symptoms recorded were not my symptoms (they were the symptoms needed to warrant prescribing this drug experimentally outside of its licenced use, while on a 10 year trial)_Also the test result indicating the drug was negative. So on request, they told the GP and confirmed the drug wasn't needed.

Being attended to, believed and corroborated in a diplomatic clinic letter correcting an embarrassing mistake, as a matter of course - was one of the highlights in a bad year. Mistakes happen everywhere and could be corrected.

The hospital consultants are more likely to review their specialised case history. The GP is more likely to rely on the last letter with an aversion to burrowing deeper back - their GP software is too clunky - and so a problematical clinic letter is unlikely to be seen again by the GP once superseded by the next clinic letter.

And once there is a good summary in a clinic letter it is important to keep note of its date so the GP can be pressed to burrow in and find it when needed.

 

[bicentennial]

Data Protection:
If you want to enjoin a working group to pool observations on this system failure - and its solution at the interface - then these brand new sub-forums popped up, where: "groups of members can work privately on collaborative projects or discussions".

Also there are 3 similar threads linked below this here thread, on: Correcting the Record (2019), Correcting medical records: Your rights (2019) and Correcting the scientific record on abortion and mental health outcomes (2024).

And this thread on Accurate Wording (2026), to be linked with this here thread on Correcting inaccuracies in consultant letter [UK]. So it all needs an index (linked to the recent discussion of sloppy MEA News).

I also dared to return and insist because the investigation mattered a lot. Mistakes happen everywhere and could be corrected. ..hospital consultants are more likely to review their specialised case history ..GP is more likely to rely on the last letter. And once there is a good summary in a clinic letter it is important to keep note of its date so the GP can .. find it

I established a connection with the lead doctor's medical secretary, who advised I can ask - on arrival in clinic (if on their clinic day) - ask to see them if needed to follow though on something. Some leads don't allow this. I also learnt from the secretary that busy consultants might not be able to read all letters from patients, for lack of time, and when is deadline to email info for upload in time for doctor to see in clinic..

But I remain unable to write complex medical letters in time to inform doctors in advance of appointments. I do not do well, off the cuff at appts, even by phone. I also learnt that this clinic became wary of letters written with help from a local PALS (Patient Advice & Liason Service) which all sounded like complaints. I was informing not complaining, but in this case I did not get PALS clerical help.

I've found doctors and secretaries willing to upload my handwritten letters, onsite.

One good junior doctor, in another clinic, was rotated out before they got time to write their clinic letter, which is very unusual around here. The junior doctor at the follow-up clinic then got a little miffed, very politely, and filed a duplicate of their own clinic letter for the previous clinic date. So asap I rang the clinic receptionist and explained:

- the GP was still waiting for the 1st clinic letter to confirm my own report that the 1st consultant had advised on a referral and planned to tell the GP. So the receptionist found the 1st doctor's note confirming the referral request was intended, and coud arrange to send that day's clinic notes to me and the GP. At other tmes I was unable to phone GP & hospital clinic receptionists and secretaries on dropped actions. So we all missed out.

The NHS is always too overloaded to chase up what I cannot chase up myself. There is no care co-ordination, no follow-through, nor any response when blood samples need re-sending to the lab and the lab asked for the re-send. If you don't get the record of test resuts you would never know because no-one too busy to action a re-send is going to tell you. Data-entry (input-output) systems leave followup to you

Sadly, people can get dropped out of the loop or take unnecessary drugs, if not keeping track, as parents must do for networked babies. The NHS is missing a lot of clues for lack of time to review and follow through on the administrative, lab and clinic records. Staff are outnumbered by clients. It is a full-time job ringing several NHS workstations to get 5 minutes of admin done.

I clap out and must give up - so NHS action on my case is suspended. Again. The automatic provision of clinic letters copied to clients was a start. We also need to see GP case notes, referrals, scan reports and test results - at the time - to keep it all on track. Good hospital trusts make marvellous records of ailment and abnormality reported to clinics, despite odd obscuring gaps and inaccuracy. But its not all reviewed.

GPs need to review hospital graphs showing the trends of test results over time, as provided by hospital software. Get back to orchestrating the orchestra they conduct. No matter that a specialist knows more than a GP, a specialist can't review far beyond their remit. The general practioner (GP) must do the general medicine in priary care. The hopital's General Medicine consultants are not on the case.

We need to study, understand and remove NHS blindfolds. When we need investigation, then a skilled review of overlooked records must OK and target it. Ps we need to inform the new Martha's Rule A&E (ER) HelpLine how to check their facts with ME/CFS clients, kith and kin. I suspect that person-centred training and skill would ask us questions instead of adding to the gloss of assumption and omission on record.