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P-222 The era of freedom of information sharing – help! (I’m a hospice Caldicott Guardian, get me out of here!)
  1. Gabrielle Tamura-Rose and
  2. Jenny Strawson
  1. St Raphael’s Hospice, North Cheam, UK


Background From 1st November 2022, patients aged 16 and over were due to have full prospective access to their medical notes via their GP records (through NHS App and other online services). We wanted to be proactive in our response – reviewing how we document and communicate our consultations, whilst not compromising the necessary detail required.


  1. Review the quality and language of our external documentation.

  2. Standardise our external documentation.

Method Community Palliative Care Team activity was reviewed over a working week (Mon-Fri), looking at all letters sent externally.

Results 41 patient visits were undertaken, with 17 letters sent. Nine were identified as having potential to cause emotional distress to a patient/those important to them. The identified letters, predominantly (7 out of 9) covered concerns regarding the patient deteriorating and requesting for a GP to visit for purposes of death certification. Of the remaining two letters, one contained information regarding the patient’s relative finding it hard emotionally, which may cause upset to the patient should they read it, and the other suggested there may be an element of anxiety contributing to their symptoms, which again, could be upsetting to a patient to read if they disagree/lack insight into their own condition.

Conclusion Of the 17 letters, none would have resulted in immediate redaction by our Caldicott Guardian if a data request was submitted, however, they do raise important questions surrounding the current style of our letter writing, use of terminology and language.

Standards agreed

  • Sensitive language, using less practical terminology when a patient is dying.

  • Use of “CONTAINS SENSITIVE INFORMATION – NOT FOR DISCLOSURE TO THE PATIENT” at the top of letters where relevant.

  • Education and communication to staff.

  • Adoption of commonly used abbreviations as listed on NHS.UK website only and reducing medical jargon.

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