Abstract

A network of specialist paediatric palliative care services is provided in the UK specifically to support children and young people and their families with life threatening and life limited conditions. Children and young people who present with other complex needs, and do not conform to the norms and values generally anticipated within children's hospice services, may be put at a disadvantage in terms of accessing the necessary care and support they require. This paper presents the findings of an evaluation undertaken over a 6 month period in 2010–2011 which focused on the question of whether there was equity of access to services for children & young people requiring palliative care regardless of co morbidity with other complex care needs. Qualitative methods were used including questionnaires to elicit the views of families, carers and professionals working within services, and interviews with children and young people who were currently accessing services. The key findings from the evaluation fell into two distinct categories: documentation to support system and process and training for staff in awareness and understanding of co morbid needs. This paper will be invaluable for those organisations in the UK who are either providing or considering providing specialist paediatric palliative care services. It provides an opportunity to consider the specific lessons learned from the evaluation and to link with highly experienced paediatric palliative care professionals and services to conduct further research into this specialist and essential area of provision for children and young people.