Why is my patient on the Learning Disabilities register?

Why is my patient on the Learning Disabilities register?

NHS England added approximately 300 codes to the Learning Disability reference set in November 2023. Many of these codes were either new, or variations on existing conditions. There were however a number of new codes which initially presented some challenges.

Some concerns were raised about a selection of the new codes which were adding patients onto the Learning Disability register who certainly did not have a learning disability. NHS England removed 28 codes in January 2023 (which is covered in this article), but a number of codes remain which EMIS users believe should not be included.

Practices should not immediately delete codes from a record, as this removes a historical diagnosis. In the context of IIF, where a learning disability review is to be undertaken, Practices should think very carefully about even coding a Personalised Care Adjustment of Learning disabilities annual health assessment declined, since this will leave a term referencing learning disabilities on the record which the patient might not appreciate especially if it was identified on a future insurance application.
Practices should raise their concerns directly with NHS England - not EMIS or Primary Care IT. 

Two conditions in particular were added to the LD refset which may be present for an individual who does not exhibit an intellectual disability.

Sjogren Larsson syndrome [111303009]
This is probably the most common code to now be included on the learning disability register. There are no known alternative codes.
We are aware of instances where the patient has Sjogren syndrome (a very different condition), but for some reason has been coded as Sjogren-Larsson syndrome. This might be due to internal Practice code mapping or coders selecting the wrong condition. These entries should be reviewed by a clinician to confirm the correct diagnosis, and take steps to rectify where necessary.


Dysequilibrium syndrome [230782004]
Dysequilbrium syndrome is another code that is now including patients on the LD register. Some of these have been coded relatively recently, but we also observe coding pre-2015 when the Read v2 dictionary was used. The symptom of dysequilibrium may have been used in the past to describe somebody who was feeling off balance, but the term was mapped to the syndrome when SNOMED was introduced.
Where the coded entry clearly describes a symptom, it may be appropriate to edit the consultation and change to something not sensitive to QOF such as "Feels off balance" [249983008].


Users might like to review all patients who were added to their Practice's Learning Disability register as a result of the code update from NHS England. The report LD New codes added to LD register will list affected patients and the condition.




    • Related Articles

    • 029. Patient Facing Services

      Patient Facing Services are an increasingly important tool for a GP surgery. In COVID times the responsibility of verifying and registering patients for online services has thankfully been moved elsewhere, but Practices should still keep an eye on ...

    • Using Check Patient in searches

      EMIS Population Reporting has a handy feature called Check Patient which can help to understand why a particular patient is or isn't included. There are two methods for using it. When a search has been run, the list of patients identified can be ...

    • Action chaser Salbutamol adding to register in last 3m of year (HP182)

      Purpose: This protocol will: Make sure performance against "AST007 - asthma with a review in the last 12 months" is optimised What does it actually do? The protocol performs the following functions: When issuing an inhaler the patient details are ...

    • Why is my patient in the list for recall?

      A commonly asked question by users is "why has this patient been included in the list for recall?" This is easy to find out. If you go to the OneRecall folder in searches and find the search entitled "OR-091) RECALL MASTER SEARCH" Further down the ...

    • Why is my patient (not) included in eligibility search?

      This article applies primarily to eligibility searches authored by Primary Care IT for influenza / pneumococcal / shingles, but the theory could also be applied to COVID, and potentially NHS Health Checks. Due to constraints of EMIS Web in ...