SNOMED, Your Doctor and You – Having an Impact

This post is about you who read it, and the ten of us or so who have helped write it, having an impact on the system. Modern healthcare is very disempowering. The arrangement that makes some medicines Prescription-Only began life as a police function and unfortunately many of us consulting a doctor can feel knee-high to a policeman especially if we even begin to hint that a treatment may not have turned out absolutely perfectly.  If we get to check our medical records we often find that this has led to records we view as wrong.

There are many RxISK posts on the theme of how to get incorrect diagnoses or details in our records changed – see Changing a Medical Record 1, and 2, and 3, and 4.  It’s very difficult, almost impossible. For many of us, its not just that the medical record is wrong, the system has captured our identity – the person there is not us.  See all the posts with a Medical Kidnap label.

A door, however, might just have opened up. Doctors only want medical things in medical records and figure when you talk about things like PSSD or protracted withdrawal that you are talking internet gobbledegook. But PSSD and protracted withdrawal now have medical codes. They are as much a part of medicine as heart attacks and strokes.

Read on.

A Door Opens?

Last week we ran a post – MHRA Adopts Code for Post-SSRI Sexual Dysfunction. Could this be the first stone that triggers an avalanche? For the first time, it’s possible to officially report post-SSRI sexual dysfunction (PSSD) to the UK’s drug regulator, the Medicines and Healthcare products Regulatory Agency (MHRA). This is because they have started using a MedDRA code for the condition (10086208) that was introduced in 2021. Other regulators are likely to follow suit.

If regulators across the world were to start receiving large numbers of reports for PSSD in this way, it will put pressure on them to do more in terms of providing better warnings and increasing awareness among healthcare professionals.

Its worth reading last week’s post.  MedDRA is a coding system regulators created to code the side effects of medicines.

A number of dedicated patient activists heavily involved in PSSD, protracted antidepressant withdrawal and other adverse effects, have recognised the importance of this development and suggested ways to take it further. It was a comment from Harriet on the post that really set the ball rolling.

Having an impact

A battle facing many sufferers of PSSD, protracted antidepressant withdrawal syndrome, and other side effects from antidepressants like visual snow syndrome (VSS) and persistent perceptual postural dizziness (PPPD), is that without a sense that medicine in general recognizes these as established adverse effects, doctors may be slow to accept your symptoms as drug-related and very reluctant to record them as such in your medical record.

Our 2019 journal article on PSSD patient experiences highlighted some of the reactions that patients receive.  See also It Feels Like We’ve Been Lobotomised.

When RxISK was first launched, our main initiative was the RxISK Report. This is a detailed document that you can fill and receive a score to indicate how likely it is that your problem is caused by a medication you are currently taking or have previously taken. The idea was that you could take the report to your doctor, and it would support the conversation you needed to have with him/her and hopefully persuade them to take on board what you were saying.

While several thousand patients have completed RxISK Reports, the feedback suggests very few of you have opted to take it to your doctor. This is understandable. Doctors are busy and appointments are brief. You need a lot of dedication to turn up with a RxISK Report and explain what it is, where it’s from, and what the doctor should do about it. The report is also several pages long.

RxISK reports have still be hugely useful in ways we didn’t expect. Anonymised data from them has formed the basis of several peer-reviewed journal articles including the article on diagnostic criteria for PSSD and other sexual dysfunctions that was published in 2022 (online in 2021).

The RxISK Report remains a primary feature of our website, but Harriet’s comment outlines something else that may be just as important and easier to manage.

Mark Horowitz launched the SNOMED component of this and the PSSD Network had the MedDRA idea.

Harriet’s idea stemmed last week’s post – the introduction of SNOMED codes for PSSD (SCTID: 1340196008) and protracted antidepressant withdrawal syndrome (SCTID: 1285639002). SNOMED is used by doctors and medical practices to record medical conditions in the notes.

She suggested a one page form that anyone reading this could fill in with a few basic details including the appropriate SNOMED code, ask for the relevant SNOMED code to be recorded in your notes and this letter to be placed on your medical file.  See below.

While a doctor might be reluctant to acknowledge these conditions during a face to face meeting and record them in the notes, simply filing a form that you have provided may seem more appealing to them. There is potentially no need for a face-to-face meeting – the form could be posted, emailed or hand-delivered to the clinic.

What’s in a name?

Antidepressant withdrawal as a concept is problematic for healthcare professionals. They are taught that withdrawal is something that lasts days or weeks, not something that a person can still be experiencing years after stopping the medication. The difficulties getting off antidepressants were always likely to lead to formulations stressing protracted withdrawal. The same holds true for benzodiazepines, antipsychotics and mood-stabilizers.

A quarter of a century ago, a Pharmacological Stress Diathesis Syndromes paper outlined what is now increasingly accepted is happening. The idea is also embodied in a set of RxISK guides on Stopping Antidepressants, as well as stopping antipsychotics and mood-stabilizers (which has linked posts on withdrawal and stress syndromes) written over a decade ago, last updated a decade ago, in need of further updates but still valuable.

Up until recently, a recognition that withdrawal could be protracted could only be found in patient groups and internet forums. Then tapering and hyperbolic tapering came along and there is a growing acceptance of the real state of affairs in professional bodies and guidelines.

The introduction of a SNOMED code for protracted antidepressant withdrawal syndrome adds a significant dollop of legitimacy and in particular makes it possible for your view of what is happening you to get formally recorded as a medical condition in your healthcare record.

The SNOMED description notes: “Antidepressant withdrawal may last for 2-3 weeks but can transition into a protracted withdrawal syndrome (PWS), which can last many months or years.”

People with PSSD often have other accompanying non-sexual symptoms, and these can now be recorded using the SNOMED code for protracted antidepressant withdrawal syndrome. For example, if you have gastrointestinal problems in addition to PSSD, you could describe yourself as having both PSSD and protracted antidepressant withdrawal syndrome.

Ideally, however, it would be better to find all of the SNOMED codes for your specific problems eg. gastroparesis, interstitial cystitis, akathisia, etc. We will have to find out if it’s possible to get specific codes for drug-induced or SSRI-induced VSS or PPPD, etc.

This offers all of us a chance to be a nuisance – a nuisance that the system cannot afford to dismiss.

How to find a SNOMED code

SNOMED is an international set of codes, so anyone reading this from almost anywhere can start to play the system.  This History of SNOMED – tells you what it is and where it comes from.

We sent the most tech illiterate of our team to see if he could find some codes – and he did. If he can, so can you.

Go to this link for the SNOMED browser.

The search box and concept details box will be empty.

Typing PSSD into the search box brings up the text below it. Clicking on this PSSD text brings the code and concept details into view on the right-hand side in the blue box.

The text in the blue box is interesting and useful. There is much more there than you see on this screen. It makes clear that this is a drug-induced condition – no ifs, buts or maybes.

Typing protracted antidepressant withdrawal syndrome brings up this condition and, again, the concept details are useful.

At the moment, typing protracted benzodiazepine, antipsychotic or anticonvulsant aka mood stabilizer withdrawal into the box brings up nothing.

There are codes for:

• Visual snow syndrome SCTID 771237009
• Persistent postural perceptual dizziness SCTID 103293001
• Interstitial cystitis SCTID 38731000087104

These can all feature as part of the protracted withdrawal picture. They may start on treatment before you withdraw, but almost all the features of protracted withdrawal are also essentially there before you start withdrawing. The codes at present for these and other problems do not say drug-induced.

SNOMED has very few specific prescription drug-induced codes. PSSD and protracted withdrawal are helping break this mold. See Tim’s comment on last week’s post – he will be pleased to know there is one for drug-induced akathisia SCTID 230333002.

Akathisia, like PSSD can almost only be caused by medicines. We figure there are over 500 drugs that can cause it including antibiotics, hormones, all psychotropic drugs and others – see drug-induced akathisia link.

There are however some other drug-induced problems with SNOMED codes including:

• Drug-induced sleep disorder SCTID 418475009
• Drug-induced constipation SCTID 21782001
• Depressive disorder caused by drug SCTID 191495003
• Mood disorder caused by drug SCTID 429672007

The current code for PSSD is tied to serotonin reuptake inhibitors. We may need a separate code for drug-induced enduring sexual dysfunction that could be applied to mirtazapine which also acts on the serotonin system and gives a close to identical picture in terms of sexual dysfunction to SSRIs.

This brings up the need for codes for the enduring sexual dysfunctions linked to isotretinoin and finasteride. Although not specific to sexual issues, we found:

• Isotretinoin adverse reaction SCTID 292669009
• Finasteride adverse reaction SCTID 293228002

SNOMED has Request Submission Portals. If you google SNOMED, you will find there is access to a bunch of systems from Argentina to the US, each of which will have a health organization licensed to use SNOMED. In the UK, there is a portal linked to the National Health Service which has a license – which is in the link above.

Whether in the US or Argentina, it looks like you will need friendly doctors to log in and make a brief 300 word submission that makes a case for Code X for Condition Y. This will likely be something you or we write for them.  Here is the Submission for PSSD.

There will be something similar in other countries. Please send us details if you find links to the right portal for you and if you can recruit a friendly doctor to help.

Your input

In terms of moving things forward, our initial thought is to put together a PDF form or Word document on the RxISK website that you can print off and complete. Harriet suggested something like this:

Heading: Please ensure and confirm that the following essential information is entered into and attached to my medical records. Thank you.

• Surgery name
• Patient name
• NHS number (UK only)
• Patient contact details (email, phone)
• Drug(s) causing ongoing adverse reactions
• Date started
• Date stopped – or still tapering for (number of months)
• Adverse reactions experienced
• Diagnosis based on drug/symptomology
• System codes – SNOMED SCTID XXXXXXX, (MedDRA – if you have it)
• Signature, date

Your covering note should try to make it clear to the clinic you want a SNOMED code put in your record and ideally also want your letter attached to your record.

Harriet thought including publication details of a few references might help get the doctor onside but this is not necessary.

Pushing this door open needs your efforts with your doctor and you sharing any thoughts and ideas while you do it.

Let us know about any SNOMED and MedDRA codes you find not listed here. It would be great if you could add them in a comment on this post or email them through Contact RxISK.

One of the useful things about MedDRA codes is that they can all, pretty well by definition, be drug-induced.

We will set up a resource on the RxISK website in the Guides and Tools menu listing all the SNOMED and MedDRA codes that you send us and that we can find, and once it’s up and live we will add a link here.  We will also list all other coding systems you may have heard about – DSM, ICD and others that might be helpful.

Hilarious

There was a moment of hilarity during the writing of this post.  One of us, not Harriet, consulted CHATGPT for its views on PSSD and found the following.

Chat GPT  November 30 2024

Post-SSRI Sexual Dysfunction (PSSD) has been recognized as a medical condition and assigned the MedDRA (Medical Dictionary for Regulatory Activities) code 10086208. This code facilitates its identification and reporting in pharmacovigilance systems globally. MedDRA is widely used in regulatory contexts to standardize the classification of adverse drug effects, which helps in recognizing and addressing conditions like PSSD​. rxisk  bmj

If you’re reporting or researching this condition, referencing this code can ensure consistency and better visibility in medical records and studies. For additional context or updates, it is also helpful to consult regulatory bodies such as the European Medicines Agency or organizations like RxISK, which document and advocate for awareness of PSSD​.

(It includes this link which takes you to Harriet – pslhub)