NHS records

[Miffie]

I thought I might share with you an interesting tale about details on our health records.

It is only recently the surgery I use has managed to make health records available online. I took the opportunity to scroll through and quite enjoyed reading some comments including “does not believe weight gain, brittle nails, hair loss, thickened skin on feet and swollen tongue are not related to her hypothyroidism.” However it was the total lack of any info about a thyroid ultrasound carried out in 2016 that had my attention. This was done when I appeared to have swelling in the thyroid area, the GP decided after examining me that an ultrasound was needed. Told to ask no questions of whoever carried out the scan I did not comment when he said “ you have probably the smallest thyroid I have ever seen” and you have extensive degenerative arthritis . I was told a full report would be sent to my GP.

I was never told anything about the result when I made future visits to see my GP. I decided I wanted to read it and was surprised to see no mention.

I emailed a request for the details to the surgery, three days later a telephone call. They cannot find it, am I sure it was not private? Where exactly was it done? Given the info and today, three working days later I have an email to say the place the scan took place have no record of it.

I have asked where I go from here. I had never imagined that every detail could vanish. No record of the referral, no record of my attending and having the procedure and no report back to my GP.

Have you found omissions in yours? Not sure where I go from here. .

[Lora7again]

When I requested my records from the hospital I attended to see my Endocrinologist I had a ultrasound done on his instructions. Included in my records is a disc showing my ultrasound so there must be one for your scan somewhere. Did you attend a hospital for the ultrasound? If you did they will have the records and a disc so it might be worth contacting the hospital trust concerned and asking for a copy of it.

[Miffie in reply to Lora7again]

Thank you I think it might be worth a go. The surgery have assured me the clinic where the ultrasound was done have no record of my ever having had such an procedure done. I am so unimpressed! I do wonder if they are just not bothering. Take care.

[Lora7again in reply to Miffie]

I was sent an email with a form which I filled in scanned and sent back with a copy of my passport. A few weeks later I received a padded envelope with a copy of all my records including the disc of my ultrasound.

[Miffie in reply to Lora7again]

Thank you I wil, do just that, hopefully it will mean it is tracked down. The unit shares a building with a GP practice but is not part of that group. Your advice is much appreciated.

[humanbean]

According to my GP records entire operations I had were a figment of my imagination. No records exist of them.

[Miffie in reply to humanbean]

Oh no! how disgraceful. I know that GPs destroy every so often which is why no one knows out full history. HoweverI thought they kept them for about twenty years?

[humanbean in reply to Miffie]

Some of my records go back to my childhood and teenage years, so the gaps appear to be deliberate.

[Minnskimoo in reply to humanbean]

Yes, I have my records back to childhood immunisations too. However, dredging through, it is amazing what you do stumble across! I have been referred to the dermatologist via the immunologist ( news to me) for some tests regarding certain oral manifestations that are still being investigated - that was in June of this year and no one appears to know anything about it. So, I have had a word to see if anyone would care to set the wheels in motion.

Plenty of other discrepancies re - dates, and wrong medication dosage amounts when tapering. I could go on but I see there are plenty of others who have similar stories to tell. Beggars belief really... 🤨

[SarahJLD]

I had an MRI at a tertiary hospital and the referring hospital and GP both denied any record of the results. I contacted where I had the MRI and was sent a request form which I returned by email and within a week I had a full copy of the report. I could have requested a copy of the MRI on DVD too but I decided against.

[Miffie in reply to SarahJLD]

Thank you, I have decided this is what I am going to try despite the GP practice advising me the unit has no record.

[helvella Administrator Thyroid UK in reply to Miffie]

Not having records is very bad. They are under a duty to retain records for several reasons.

I would definitely make a formal, written request to the place that did the ultrasound.

[Mostew]

Very interesting

I had a gastroscope . By mistake the hospital sent me a letter meant for my GP . It said a mistake had been made and various other things I wasn’t meant to see ...a few days later got ‘my’ letter.

Not advising it needed to be redone

So I wrote to hospital , few days later a consultant rang . He knew they had been found out . Profuse apologies given . He spent half an hour talking to me

So I have now asked for my records but only got superficial stuff . Seems I have to apply again for in depth ( they ‘forgot’ to tell me that .

I

[Miffie in reply to Mostew]

I am starting to see that things are not particularly well recorded or handled within the NHS.

[Smomo in reply to Miffie]

That's why we have to be very pro active.

[Miffie]

I know, I have taken things into my own hands previously due to the shocking manner in which hypothyroidism is now treated by the NHS. Given advances in science and medicine it beggars belief I was better treated in the 1960s than I am now.

[Minnskimoo in reply to Miffie]

Yes, I can go with that one! Thinking exactly the same.

[Rapunzel]

Be interest to see DJR1 's response to this; considered (by me!) to be our patient access guru...

Hope you are able to locate this. Otherwise, you can have your own done. Mine cost £80 a few years ago here balticmedicalcentre.co.uk/. I have never shared this with my GP, but it similarly showed a wizened thyroid. Best x

[Miffie]

Yes I too would like to hear DJR1 ’s view on this if there is any roue not previously suggested.

I have absolutely no intention of having one done privately, I only wanted to see if it could support the diagnosis that my thyroid function had been destroyed by radiation therapy in the early 1950s . Was wondering if a change of staff at the GP surgery might mean someone felt able to refer me to an endo. Previously been refused first because “Endocrinologists deal with patients who develop hypothyroidism as adults, they have autoimmune thyroiditis. As you don’t they will refuse to see you”. Secondly just last year “ No I can’t refer you, I am not convinced you have ever had any thyroid problems”. “I cannot do you or any patient harm so it’s a no to any referral”. Possibly the most arrogant young man ever, he couldn’t even prescribe a loading dose of vit D! Still insisted every doctor I had seen in nearly sixty years was wrong.

It can be an expensive business, I have just had a delivery of ndt, not my usual as it’s not available, it cost £158 including postage, customs and VAT were £57 and Royal Mail handling £8. It will hopefully last 7-8 weeks. Take care

[DJR1 in reply to Miffie]

I despair at the accounts of comments in records and your missing scan results but I am not surprised. The best advice is to contact the clinic directly. The referral should be mentioned in the consultation notes and there should be some sort of referral letter/form.

However I recently heard about a GP who was not happy about patients now having the right to reading his notes so has now taken to writing “Had a chat with patient today”

and no other information.

Our campaign network has found there is no specific guidance/rules about recording detail in patient records from the RCGP. It seems anything goes and frequently does. Let us know how you get on. Thank you all for your kind comments.

[Lora7again in reply to DJR1]

I wonder what he had written in the notes in the past to make him write that? I can can only imagine because years ago doctors and GPs did make personal comments about patients as I found out when I read mine. I am still angry about "delusional" being written on mine when I was suffering from untreated Graves' for over 2 years!

[Miffie in reply to DJR1]

Thank you, I have emailed the clinic. I will update. Your knowledge has given me additional confidence in dealing with the medical bodies.

[humanbean]

The most bizarre thing I read about that someone found in their GP records...

The patient (according to his GP records) had only one arm, but quite clearly anyone looking at the man would have seen he quite obviously had two.

[Lora7again in reply to humanbean]

I used to work in medical records at one time and some of the records were in a right state and tied together with string to stop them from falling apart. My job was to pull records for certain clinics and sometimes we could not find someones records and whoever took them had not signed to take them out. This was in the 80s and 90s so hopefully things have improved?! I have said this before but one time I couldn't find someones records so I asked the consultant about them and he admitted he had them in the boot of his car and had forgot to bring them back and had been driving all over the place with them.

[helvella Administrator Thyroid UK in reply to Lora7again]

Many, many years ago I worked in a hospital. I used to have to go to the records office from time to time. Shelves full of records - some falling out of their envelopes.

One time, a friend found the records of a famous actor on the floor where they had spilled out.

If I saw that now, I'd be raising a stink. Seemed all too normal then.

[Lora7again in reply to helvella]

There was no one to stop me reading someones records because I worked flexi-time and would spend hours alone pulling records for clinics the next day. I didn't read them of course but I know of people who did and they were reported and sacked for doing so.

[userotc]

To be honest/cynical, many records don't matter at our surgery anyhow as no one seems to read them. Often we've seen on Patient Access over or under range results but no contact made (or receptionist states doctor says everything fine if we call!).

And it was my dad who informed my mum she'd had stage 3 kidney disease for years after finding on PA. Soon after she had to have 1 removed due to a tumour.

I suspect most NHS surgeries useless.