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P-167 Are we getting it right? – challenges of service user representation in hospice services
  1. Sharon Quinn and
  2. Phil Nash
  1. St Luke's Hospice, Basildon, UK


St Luke’s Hospice User Group (HUG) was established in 2013, consisting of a core group of patients and carers meeting monthly supported by the Supportive Care and Development Manager. Its aims include:

  • Contributing to the strategic and operational development of Hospice Services.

  • Participating in strategies to ensure the patient/carer voice is heard.

  • Helping identify issues that affect the quality of the service user experience.

To enhance their knowledge further in relation to the range, types and content of service user engagement, the group carried out a survey of other UK Hospices. A random sample of 31 Hospices were sent a 15 point questionnaire and a response rate of 40% was achieved. Of those that responded, 60% were running a patient representative group. The remaining 40% expressed an interest in establishing a group/ measures for service user input, with several requesting further information about how to go about this.

From the survey a range of beneficial information was gleaned regarding:

  • Recruitment strategies (successful and unsuccessful)

  • Type and nature of Management support for groups

  • Group literature available

  • Group activities and achievements

Results confirmed that a number of challenges exist when facilitating service user involvement within Hospice Care. These include:

  • Methods for ongoing recruitment.

  • Attrition rate of participants.

  • Ensuring feedback on the patients experience is current.

  • Potential to blur boundaries and become a support group.

  • A range of engagement methods are employed including emailing out specific questions/issues to a defined group of service users held on a database to regular structured meetings all with varying levels of success.

  • The lines of reporting to Hospice management and Trustees.

The poster will outline the audit findings in detail including recommendations for establishing an organisational strategy for service user involvement.

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