Significant publications

Framework for Delivery of Palliative Care to Children and Young People in Scotland (November 2012)

This framework aims to ensure that there are recognised pathways for palliative care within and between Health Boards for every child and young person from the point of diagnosis of a life-limiting condition (LLC) or life-threatening condition (LTC), through to living with their conditions until the end of their life. These pathways should be equitable, sustainable, age appropriate and independent of geography. ISBN: 978-1-78256-165-1 (web only)

Local preferences and place of death in regions within England 2010 (August 2011)

The research team from Cicely Saunders International has been conducting pioneering work on place of death since the very beginnings of this charity, in 2002, when it was founded by Dame Cicely. This report represents an important step in improved national intelligence about end of life care across England. It provides health care professionals, care managers, policy makers and politicians – with the most updated information aimed at understanding people’s choice on place of death when approaching the end of life. Barbara Gomes, Natalia Calanzani, Irene J Higginson No ISBN

Lymphoedema Self-Management Top Tips (October 2012)

The Macmillan Lymphoedema Project for Scotland launched the 'Top Tips Guide for the Self Management of Lymphoedema' on Friday 05 October 2012. This Guide has been co-produced with people who live with lymphoedema and their carers and is for use by people with lymphoedema and also a useful resource for health and social care providers involved in lymphoedema care. The Guide was officially launched by Mr Michael McMahon MSP. No ISBN.

Best Practice for the Management of Lymphoedema: an international consensus (November 2006)

ISBN 0-9547669-4-6 The Lymphoedema Framework presents a model for best practice in lymphoedema in adults with the aim of raising the profile of the condition and improving the care that patients receive. Lymphoedema is a progressive chronic condition that affects a significant number of people and can have deleterious effects on patients' physical and psychosocial health. Even though it may be greatly ameliorated by appropriate management, many patients receive inadequate treatment, are unaware that treatment is available or do not know where to seek help. The Lymphoedema Framework presents a model for best practice in lymphoedema in adults with the aim of raising the profile of the condition and improving the care that patients receive. The document was derived from a UK national consensus on standards of practice for lymphoedema services and was driven by the Lymphoedema Framework with input from national patient support groups, patients with lymphoedema, national professional lymphoedema groups, clinical experts and industry. Production of the document included review by an international panel of experts and endorsement by key national lymphoedema organisations. This document is intended to be multidisciplinary and internationally relevant; it identifies and critically appraises the best available information and links recommendations to supporting evidence.

The Lothian Advance Care Planning Project Report (June 2012)

In 2010 NHS Lothian funded a one-year Project which, in collaboration with Marie Curie Hospice Edinburgh and St Columba’s Hospice, would support health care staff across Lothian to implement Advance Care Planning (ACP). A Project Steering Group was established and Project Manager appointed. A key goal for the Project was to develop palliative and end of life care in Lothian through ACP in line with national and local strategies and existing ACP initiatives. Arising from the report were summaries of overall key findings and key recommendations on how to best support clinical teams to implement ACP in Lothian.

St Margaret of Scotland Hospice & Glasgow University Find a Solution Audit Report - Living & Dying Well (September 2012)

Background: Published in 2008, Living and Dying Well – A National Action Plan for Palliative and End of Life Care in Scotland (L&DW) aims to provide fair access to good quality palliative care for all who require it. Narratives from patients, carers and healthcare staff in St Margaret of Scotland Hospice (SMOSH) suggested that L&DW had not yet been fully and successfully implemented. Consequently, the need for an audit was identified. Aim: To assess patient perceptions on whether specific action points (2, 4, 10, 16) taken from L&DW are being implemented consistently and for the majority of patients with palliative care needs. Methods: This was a retrospective audit using structured questionnaires which enquired about the patients’ perception of their care prior to receiving any Hospice services. Each question was designed to assess one action point from the guidelines. The sample consisted of 30 patients attending the Edwina Bradley Day Hospice or receiving services from the Community Specialist Palliative Care Team of SMOSH. Data analysis was performed using SPSS to calculate frequencies and conduct cross-tabulations for the sample split by gender, age and diagnosis Results: Positive findings included the adequate assessment of physical, social and environmental needs, quick provision of needed adaptations or equipment and sufficient provision of patient-centred care for the majority of patients. Conversely, assessment of emotional, spiritual and financial needs and provision of information regarding ACP, Thinking-Ahead and e-PCS was poor for the majority of patients. Answers regarding certain aspects of care provision differed noticeably between groups when the sample was split based on age and diagnosis but statistical significance of these differences was impossible to determine due to the small number of participants. Conclusion: The findings demonstrate that patient experience of the delivery and quality of non-specialist palliative care remains variable. This suggests L&DW has not yet achieved its aim of improving palliative care for all who require it. Further work, with a larger sample size, is necessary to improve the holistic assessment of patients, the communication between healthcare professionals and the provision of information for patients. ISBN: Not available.

Dying for Change (2010)

Published by: DEMOS This document examines how people in the UK die and consequently how palliative care needs to change and be improved. It argues for improvements to existing services: making end of life advance care plans the norm; training more in the medical profession in palliative care; and more greatly integrating the care services provided by the public, private and voluntary sectors. It also suggests radical innovations; a new infrastructure of home hospices, the creation of a compassionate care benefit and a properly trained volunteer support network providing palliative care. ISBN: 978 1 906693 55 8

Care Commission: Better Care Every Step of the Way (April 2009)

Published by: Care Commission This publication reports on the quality of palliative and end of life care in care homes for adults and older people. ISBN: Not available Reference IHD/006/0109

Audit Scotland: A review of palliative care services in Scotland (August 2008)

Published by: Audit Scotland The Review provides an overview of activity, costs and quality of both general and specialist palliative care in Scotland. ISBN: 978 1 906752 12 5

A Scoping Review of Palliative Care in Scotland Final Report (May 2006)

Published by: Cancer Care Research Centre, University of Stirling A review (scoping exercise) was undertaken of published and unpublished palliative care research in Scotland in order to in order to identify gaps in the evidence, thus allowing research priorities to be set in an objective way. Staff at the Cancer Care Research Centre also wanted to compile a research directory profiling planned, current, and recently completed palliative care research in Scotland in order to improve communication networks between researchers throughout Scotland, and share research practice. ISBN: Not available