NIHR CLAHRC in South London
Overall Aim: Establishing a palliative and end of life care collaborative across South London
The Cicely Saunders Institute is delighted to be a part of the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London. The CLAHRC South London comprises researchers, health professionals and NHS managers working at universities and NHS organisations south of the river Thames. Together they successfully bid for a £9 million grant from the NIHR that will help fund research activities for five years, starting from 1st January 2014.
This is one of very few Palliative and End of Life Care (PEoLC) CLAHRC themes in the country and has three different work streams (detailed below) which we are hoping to achieve and deliver in this five-year project. In addition to the PEoLC theme led by Professor Irene Higginson, there are eight other work streams in the NIHR CLAHRC South London, including Alcohol, Diabetes, Infection, Psychosis, Public Health, Stroke, Maternity and Women's Health, and Patient and Public Involvement.
Project 1: Geographical Accessibility to healthcare facilities and place of death in South London Stream
Theme Lead: Professor Irene J Higginson
To establish a science-based, inclusive, focused, well managed collaborative in Palliative and End of Life Care (PEoLC) that leads and conducts applied health research relevant across the NHS, and that translates research findings to improve outcomes for patients and their families. This incorporates patient, family and public engagement.
The PEoLC theme has two projects with an overall collaborative running through the projects to promote engagement with primary care services and clinical commissioning groups, as well as patient, family and public involvement within the Institute's research.
Project 2: To agree and implement a common set of measures to capture patient needs and outcomes in palliative and end of life care
Research Assistants: Clare Pearson and Sumaya Huque
This workstream draws on earlier work from the GUIDECare project, using routine data resources to understand more about variation in place of death. A key aim is to map the geographical location of healthcare services in South London and visualise how variation in place of death is related to the location of services. The outputs will be useful for service planning and commissioning, optimising resources, for understanding more about factors associated with place of death and how services can be configured to meet people’s needs and preferences. One of the main datasets we will use is the Death Registration Data from the Office for National Statistics which contains records on all deaths that happen in England. We will also link together data from various different sources to produce a complete picture of palliative and end of life care (PEoLC) services in South London.
Overall collaborative work: Patient and Public Involvement (PPI)
Stream Lead: Dr Fliss Murtagh
Staff involved: Susanne de Wolf-Linder and Marsha Dawkins
The outcome and data collection work stream aims to measure, demonstrate and improve care through the use of outcome measures. This work stream will use individual (routinely collected) clinical data and aggregated (e.g. facility, workforce, service-level) data to improve our understanding of population needs and outcomes, support evaluation of interventions and benchmarking, build capacity in staff and services, and enhance patient outcomes and experiences.
Stream Lead: Dr Fliss Murtagh, Dr Jonathan Koffman & Dr Catherine Evans
Staff involved: Susanne de Wolf-Linder, Lisa Brighton, Sophie Pask & Dr Ping Guo
To establish a science-based, inclusive patient and public involvement model, which produces quality research outputs and adds value to projects one and two - helping to lead patient and public involvement in palliative and end-of-life care applied health research relevant across the NHS, ensuring research relevance and quality.
The Institute has been hosting workshops for PPI members over the last twelve months and are currently working on building a virtual platform to allow further participation and increased diversity for those able to contribute. If you are interested in attending one of these workshops and becoming a member of the PPI group please email firstname.lastname@example.org
April 2016- Staff from the Institute and Patient, family and Public Involvement (PPI) members attended the annual NIHR CLAHRC South London PPI event on involving service-users and their families in research.
February 2016- The Institute hosted another successful PPI workshop entitled 'Difference through involvement' wherein researchers, patients, families and members of the public shared their experiences of collaborating on research projects in palliative and end of life care.
November 2015- Clare Pearson, Research Assistant on Project 1 presented a poster at the recent Hospice UK conference in Liverpool regarding Geographical accessibility to hospice for non-hospice deaths: A comparison in South London.
September 2015- Dr Fliss Murtagh presented at the Scottish Partnership for Palliative Care on 'Everyone’s Talking About Outcomes' - but what precisely are they, why are they important; what and how should we measure in palliative and end of life care?
September 2015- Professor Irene Higginson gave evidence as a witness at the Public Administration and Constitutional Affairs committee meeting at the House of Commons as part of a session on the Dying without Dignity-PHSO report. Watch here
July 2015- The Institute hosted its annual conference entitled 'Measuring the difference we make: outcome measures and quality indicators in palliative care'. Speakers included theme lead, Prof Higginson and project lead, Dr Murtagh. The conference will be available to watch on our YouTube channel shortly.
May 2015- The OACC team, in collaboration with Hospice UK, has launched The OACC Palliative Care Outcome Measures Resource Pack. They are designed to support hospices and palliative care providers across the UK in implementing outcome measures into clinical practice. The Pack is available to buy from the King's College London estore, for more information please contact us.
May 2015- The team presented posters at the recent EAPC World Congress in Copenhagen including one from Susanne de Wolf-Linder et al. entitled: Implementing a patient, family caregiver and public involvement model for palliative care research in order to influence clinical care, policy and funding
May 2015- The team presented posters at the recent EAPC World Congress in Copenhagen including three by Dr Jana Witt entitled: Using electronic tablets to collect outcome data in palliative care- help or hindrance?; Outcome measurement in palliative care: an updated systematic review of the use of two popular measures in clinical care and research and; International advances in outcome measurement in palliative care: one step closer to cross-national comparisons of routinely collected outcome data in palliative care
Susanne de Wolf-Linder also presented Bridging the Gap between Practice and Research: An Analysis of the ‘Bottom-up’ Approach within an Outcome Measurement Implementation Project
The OACC team presented Implementing Outcome Measures in Palliative Care: Putting the Evidence into Practice
April 2015- Results of a transparent expert consultation on patient and public involvement in palliative care research, published in Palliative Medicine and lots of positive input via our @CSI_KCL Twitter account
For all Institute events see our events sections
27/04/2016- Open Seminar
Dr Erica Borgstrom, London School of Hygiene and Tropical Medicine- The personal impact of English end-of-life care policy 16.00-17.00
No registration is required, more details will be available soon.
Palliative care in Neurology
The Cicely Saunders Institute is hosting an exciting one-day international conference to explore palliative care for people affected by long-term neurological conditions. The day will be focused around symptom control in this patient group, with speakers including experts from both the palliative care and neurology professions. View the programme here.