Introduction This child and young adult hospice has a strong commitment to user engagement to meet CQC requirements and as an essential component of a patient centred approach.
Aims A 6 month secondment reviewed current practice and planned future work. The priority was to ensure that all ages and abilities were included in participation.
Methods Current practice was compared with other hospices and assessed using the Children's Hospices UK User Participation Toolkit. Writing KPIs clarified goals. The patient group was segmented by age and ability to ensure that appropriate methods of engagement were used. Patients and parents were surveyed using questionnaire or semi-structured interview.
Results A range of options were presented by parents and patients including the use of social media, and online communication. Focus groups are successful regarding specific issues only, but less useful to evaluate ongoing experience. Recording the anecdotal, and engaging care staff in doing so, adds richness to the more formal methods of engagement.
Discussion The ability to offer feedback to a neutral person (eg, a volunteer) encourages participation. Use of communication resources designed for specific groups, such as those with learning disabilities promotes engagement. For some this may be the only time they have been asked their opinion and they may need to be empowered. However it is important to manage expectations, it is not always possible to act upon feedback gathered.
Conclusion Meaningful user engagement with this diverse client group requires creative methods to enable all to participate. Being able to draw on the broad skills of the care team and dedicated staff time is required to ensure that user views are listened to. How the organisation responds to the users' views and the rationale must be feedback to the user. Further work should extend to other service users, for example, volunteers and fundraisers.
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