Evaluation of the need for a paediatric palliative care service in the west of Scotland

Abstract

Aims To assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required. Methods A semi-structured survey, containing 22 questions, was sent by email, to all paediatric consultants, associate specialists and speciality doctors in NHS Greater Glasgow between October 2014-April 2015 (107 recipients). Data were analysed using a mixed methods approach; thematic analysis was performed on free text responses. Results 76 recipients responded to the survey of whom 95% were consultants, and 83% worked in a tertiary children’s hospital. 54% stated that palliative care comprised 50%. 69% felt they lacked time, and 67% the resources, to sufficiently address their patients’ palliative needs. The most common palliative needs of patients were identified as immediate end of life care (91%), family support (84%), nutritional support (81%), and social / emotional (83%) support care needs, whilst spiritual needs (49%) were less commonly identified. Dominant themes emerging as barriers to palliative care provision included: failure of identification of a child’s palliative care needs by their primary speciality, lack of current services particularly in relation to community nursing support, difficulties accessing current palliative care services (including how to refer patients and what services are available), and no identified lead clinician for palliative care. 55% of respondents commented on positive interactions with the local children’s hospice, including support for end of life care and sibling support; and the role of specialist nurses and the family support service. 88% of participants expressed a desire for a dedicated children’s palliative care service. Participants were asked to comment on the services they would expect. Eight themes were identified including, the need for on-call clinical support, coordination of services, and improvement of bereavement services. Conclusions Paediatricians from a range of specialties lack the time and resources to provide the specialist palliative care children need. There is a significant need in Greater Glasgow for the development of a dedicated paediatric palliative care service.