Can you write a letter to be placed on your medical records?

[blossomt]

I have a chronic medical condition (physical) for which I'm looked after by a specialist hospital department. I was diagnosed years ago with all the official tests etc. They see me once a year for a general checkup, but more often if I'm experiencing problems. Over the last few months, they have sent several patronising update letters to my GP. There's a lot of gaslighting going on, and they are heavily suggesting that all my recent problems are psychosomatic, even though test results have shown otherwise (but they conveniently left this information out of the letter). They even suggested that I should do yoga?! But I've been doing yoga for many years, since way before I became ill. They're basically trying to pass everything off as anxiety. I'm fed up. The last letter was written by a registrar who doesn't even know me, and wasn't even the person I saw at my last appointment.

Please don't ask me for any more information about my medical history as I don't want to discuss it here.

I'm not interested in making a complaint to PALS, because this isn't what this is about. It's more that I'm really concerned about how my medical records could come across to a new doctor who didn't know me, as they are basically passing everything off as a mental health problem, and this could affect what happens next time I see someone if they look through the notes.

But I would like to know, can you write a letter specifically to be placed on your medical records, in which you clear up some of the accusations they've made?

Who should I send it to? Should I send it to the the hospital and say I'm copying in my GP? Or should I send it to my GP and say I'm copying in the hospital? Should I specifically say "I would like this to be placed in my medical records?"

I'm also worried about the repercussions of me sending such a letter. I accept that I might be seen as "difficult" but I can live with that. You sometimes have to be if you have chronic health problems, otherwise you'd get nowhere. But I'm worried they might interpret it as more "proof" that I'm just someone who gets upset about everything all the time, and then they could use it against me to say that I'm always having a rant, or something.

Could I just reiterate that I'm not interested in discussing my actual medical condition here. But I would like to know how best to handle this situation in terms of paperwork and what would be the best thing to do.

It's difficult to advise without knowing what the medical condition is.

In your situation, this is what I would do:

• request a copy of your medical notes, so you have a copy of the test results confirming your original diagnosis (sometimes there is a small printing charge for this, and it might take a while, but they should do it)
• then write a letter to your consultant, cc-ing your GP, stating that you feel your recent appointments seem to include health advice that doesn’t fit your diagnosis, and attach a copy of the test results. Request an appointment to review your health overall, since X years have passed since original diagnosis

Patients are often the best expert on their own condition. If you’re not already connected in to specialist groups / charities for your condition, that’s often a good way to learn about any advances in treatment etc.

It may be that research has moved on since your diagnosis, and the recommended treatment might have changed - so it’s possible that they are still taking you seriously, but just doing a bad job of explaining why their advice has changed.

I would imagine so. When I couldn't get an appointment to see my GP, I sent an email, and that email is now on my records.

Further I had a similar(ish) issue. When my youngest was born, my womb ruptured and I lost 3.5 litres of blood and had lots of units transfused. It didn't appear on my records, as when I changed surgeries, the person who inputs the data onto medical records, left that out, so there was no record of me being given a transfusion.

It may seem petty to insist that the transfusion was recorded, but now, on the list for urgent surgery, pre-op asked for a blood sample - this shows that I have lots of 'weird' antibodies, and will need a test 72 hours before surgery so they can order in special blood for me....this wouldn't have been requested if I hadn't have insisted the blood transfusion was recorded.

So yes, definitely write a letter and ask for it to be included on your records.

@buggeringbuggery Wow, that's really dangerous! When you've had a blood transfusion there's various circumstances where it's absolutely essential that doctors know about it. I'm glad you got the information added.

@buggeringbuggery not quite sure I follow your logic.

The decision to do a group and screen blood test pre-op is not based on previous transfusion history but on the likelihood that a patient will actually need a blood transfusion. Most hospitals have a document outlining what tests should be taken pre-op for most surgeries.

eg. appendicectomy no blood transfusion sample required. Major spine surgery - need to be cross matched two units.

The key thing I would want to know from your history now is not that you have had a transfusion (lots of people have and don't have problems afterwards) but that you have antibodies and are hard to cross match.

As GP records don't link into hospital records and medical records from different hospital trusts don't link (all of which is a bit crazy, I know) the best way to ensure this information is passed on is to make sure you mention it to any treating clinicians especially those at any pre-admission/ pre-anaesthetic assessment.

I can't offer any advice but following with interest as have wondered similar for myself.

I have an severe anxiety related disorder that was diagnosed 20 years ago. I had several years of CBT and I tried every medication available but the problem persisted to the point that everybody just gave up and said I'd have to learn to live with it. I have managed for many years with no input and no medication but that does not mean I don’t struggle every day and that it doesn't impact my life massively. Sometimes I worry about how I'd prove this in the future (to access new treatments or to claim benefits for example). My records may look like I'm perfectly fine now but in reality I've been struggling along for many years with a chronic condition for which there is no effective treatment. Every few years when I see the GP I just mention that the issue is ongoing in the hope that it's recorded somehow. I'm not confident since I also have an allergy to penicillin but have been prescribed this on 3 occasions despite it being in my records! I'm not sure how much they actually check our medical background even though they should.

This is really good advice OP. I also think you have to tackle it at the source, which is the specialist department at the hospital.

I'm a GP. You can certainly write to either the GP or hospital, or both - GP and hospital records are separate.

When drafting the letter, think carefully about what purpose you want it to serve. Do you just want to have your perspective logged, or do you want this letter to influence your management in the future? If the latter, I would strongly recommend keeping it short and focused on any actions you want clinicians to undertake or avoid. The people reading it in the future, will likely to skim-reading it in the midst of a busy clinic. A bullet list of priorities, from your point of view, can be very helpful. A long exposition of everything that has gone wrong to date, no matter how justified, will probably not get read.

Not saying this is how it should be, just saying that's how it is.

I already have copies of the original test results and scans. They are clear as day.

I also follow a charity group and all the latest treatments etc. The issue is that every time I have a flareup, they tell me it's not a real flareup and that the symptoms are just being caused by anxiety. So they won't give me any treatment at all, in fact the letter also suggests that I should try antidepressants. I don't want them, I want medication for the physical symptoms of this chronic, physical condition.

Any written correspondence from you gets scanned into your medical records BUT that may not achieve what you think it will. As a clinician in primary care, unless I read your documents I would be unaware of the letter from you. You are better off seeing your GP to ensure that your opinions are in the 'journal' part of your medical records

Thank you very much. I'm going to keep the letter as concise as possible. It's going to be focussed on responding to this one particular letter, and not a whole catalogue of errors or anything like that, hence it's not a matter for PALS (and as an aside, PALS rarely do anything to help either. I've been down that route before and it achieved nothing).

What purpose do I want it to serve? I need this to influence my management in the future, and in particular, emphasise that this is a diagnosed, physical medical condition and that I'm not a mental health patient. Several letters over the years have painted me as being a bit neurotic and just needing to calm down etc and I feel like they've given me a bit of a reputation for that, and this will very likely influence how any new doctor might view me, especially if they're just skim-reading. This letter recommending yoga is really the last straw, and I will be pointing out that I started doing yoga many years before I became ill.

As an aside, I won't be mentioning this in the letter, but in my personal leisure time I've met all sorts of people who think you can cure any medical problem with one or more of yoga, meditation, going vegan, eating exclusively raw food, essential oils etc, and I wish they'd stop with their unwanted advice. The yoga comments on the letter are what I would expect from these people, not from a qualified doctor.

But I'm just a bit worried that sending them a letter like "I am not a mental health patient" could backfire somehow.

Lots of misconceptions in this post

Yes that's a good point. Most GP appointments are telephone appointments now at my one, and it's very rare to get a face-to-face appointment any more. Maybe I could send the letter first, then book a telephone appointment to discuss it?

@blossomt - perfect!!!

Alright, sorry then. I would've assumed it would be important but there you go. Start a new post about it if you want.

I sympathise with the situation and your concerns, and I'm glad some have advised how to handle the letter.

On the NHS app/site for the app for browser, you can get your digital GP records, which could be useful in seeing just what has been put down that you might want to consider for your letter, though can be more annoying if things don't match up with your medical history or what happened in the appointment.

I've some iffy records, but when I've had doctors go back through my records when we're discussing things, they've mainly gone straight for the test results. I'm not sure how much impact my records saying things like I'd decided something I'd been going through months of tests for "weren't that bad and decided to wait and see" when actually the GP had suggested one medication, found out I was contraindicated for it by struggling to do some tests on me, and then pushed the wait and see as the only option and similar odd remarks that have concerned me.