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P-57 Patient experience: the real stories
  1. Anne Black,
  2. Catriona Mayland,
  3. Tamsin McGlinchey,
  4. Maureen Gambles and
  5. John E Ellershaw
  1. Marie Curie Palliative Care Institute Liverpool, University of Liverpool, Liverpool, UK


Background ‘Person Centred’ care has been promoted in End of Life Care since 2008 (DH 2008). National frameworks recommend that the views of service users should inform ongoing service improvement (NPELCP 2015). Therefore, a study was undertaken in one acute hospital in the North West, to explore the views and experience of recent hospital in patients, who also received direct input from the HSPCT.

Aim of this presentation Provide an overview of the project and present the main findings from this study.

Method Phenomenological approach adopted utilising:

  • Narrative Interviews with 20 recently discharged palliative patients; Thematic Analysis undertaken.

  • Case note review - key elements regarding recent in-patient episode.

Results Case Note Review: ‘Medicalised picture’ of the patient journey observed; when HSPCT involved, ‘holistic’ accounts were evident.

Narrative Interviews: Data collected highlighted the ‘richness’ of the patient experience, and the value of conducting this type of research. Five ‘themes‘ were identified:

Institutional Cultures

  • The ‘simple things’ matter to patients; smile, touch, compassion


  • Modes of communication; impact on perceptions of care experience.

  • Involvement of the HSPCT

  • Initial anxiety about referral to HSPCT; fearing death was imminent.

  • Therapeutic impact; focus on holistic well-being and the person as an individual.

  • Loss of Control and Loss of Self

  • Coming to terms with a life limiting illness; impact on sense of identity.

  • Hospital provided a ‘secure’ and ‘supportive’ environment for some; once discharged some patients felt ‘alone’.

  • Burden of Symptoms and Treatment

  • In-patient stay for some was characterised by their experience of pain.

  • Challenges for patients; choices and decisions regarding treatment options.

Conclusion Findings increase knowledge of care delivery from the perspective of palliative care in-patients, and has provided information directly to the acute trust to support local change and improvements to patient care experience.

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