Background Patients living with Interstitial Lung Disease (ILD) experience multiple symptoms. Specialist Palliative Care (SPC) provided by Marie Curie was embedded into the regional ILD clinic at the Royal Victoria Infirmary, Newcastle upon Tyne in January 2016. Patients are first seen by a respiratory specialist and, if required, offered a same day SPC review.
Aim To evaluate the experience of patients to assess whether embedding SPC into a regional ILD clinic is acceptable to our service users.
Methods A survey was posted retrospectively to all patients who were reviewed by SPC in the ILD clinic between January 2018 and October 2018 and who were still alive at the time of survey (November 2018). Questions focused on previous awareness of SPC, timing of the appointment, perceived outcomes and overall satisfaction.
Results We identified 42 patients, 23 were alive at the time of the survey. We received 13 completed questionnaires (response rate 57%). Although 6/13 had an awareness of palliative care, the majority (12/13) had no prior experience of SPC. 10/13 could identify a positive outcome from their SPC review (the remainder left this question blank). All respondents were satisfied with the timing of their SPC assessment; none would have preferred to return for a separate appointment. All would recommend our service to a friend.
Conclusions We conclude that our integrated service is acceptable to our patients. Despite clinician fears that a previously unplanned SPC review could be overwhelming, survey respondents refuted this concern. Just under half of the patients reviewed by SPC in clinic were in their last year of life. Most respondents were not previously known to SPC, meaning that we are not duplicating the work of other teams. Although these conclusions are specific to the Newcastle ILD/SPC clinic, we present a model which could be replicated.
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