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O-21 Driving culture change: cross-organisational engagement with people with personal experience
  1. Andrea Dechamps
  1. St Wilfrid’s Hospice, Eastbourne, UK


Background User involvement in hospices, whilst acknowledged as important, can be viewed as particularly difficult with people nearing end of life, can become the sole domain of a particular worker/expert (e.g., the palliative care social worker) and can lack overall buy-in from across organisations. Two years ago our hospice disbanded our main vehicle for user involvement, the Patient Forum, in their own judgement by now weary and unoriginal. Under a PPE (People with Personal Experience) governance stream we embarked on an open-ended, ambitious drive innovating engagement with PPE.


  • To work towards cross-organisation engagement with PPE, through multiple time-limited PPE initiatives led by volunteers, clinical and non-clinical staff at all levels and across settings.

  • To instil a sense of curiosity and develop competence amongst all staff and volunteers regarding PPE involvement.

  • Ultimately, for PPE involvement to significantly influence service delivery and development across settings.


  • Definition of PPE revised to include our patients, families, customers, public, community, staff and volunteers.

  • Key performance target set at 20 PPE initiatives for 2016/17 demonstrated senior commitment.

  • Support given to project leaders, with focus on ‘(almost) anything goes’

  • Initiatives mapped by project leaders against business priorities, CQC Key Lines of Enquiry, Quality Improvement Priorities and themes from complaints.

Results Twenty diverse initiatives delivered 2016/2017. Two showcasing events. Demonstrable changes to service delivery across the organisation resulting from above plus culture change amongst staff and volunteers.

‘I am just beginning to understand what PPE involvement means – it matters!’

‘Involving families in how we design xx, designing xx in collaboration, has made a real difference.’

Conclusion The above describes the first significant stage of a new approach to PPE involvement. We already have demonstrable evidence of quality improvement as a result plus culture change. We believe the described approach to be innovative and have potential for duplication in other settings.

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