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Research project: Variations in out of hours end of life care provision across primary care organisations in England and Scotland - Dormant - Dormant

Currently Active: 
No

Timely access to high quality appropriate end of life care in the out of hours period has been reported to be a key factor in enabling patients at the end of life to be able to remain at home, if this is their wish. Deficiencies in out of hours end of life care have long been recognised. Most out of hours end of life care is provided by generalists: health care professionals who, although often expert in their own field, have not had specialist palliative care training. Before evaluative research can take place information is needed about how this care is currently provided, about variations in service provision, and whether identifiable models of service provision exist from a systems perspective.

The aim of this study was to describe the variation in provision that exist across England and Scotland, investigate the extent of distinct models of care and explore the views of commissioners and senior managers, in order to help inform commissioning decisions and the direction of further evaluative research.

The study collected data from four sources.

  1. Qualitative telephone interviews with senior managers in Strategic Health Authorities and Heath Boards responsible for end of life or out of hours care.
  2. A telephone interview survey of key informants knowledgeable about commissioning or providing out of hours end of life care in Primary Care Organisations (PCOs).
  3. Expert Panel to discuss: service delivery variations within the data, emerging care models, ‘good' out of hours end of life care characteristics and theoretical propositions about out of hours end of life care.
  4. ‘Virtual' User Panel to obtained views about preferences for, and experiences of, out of hours end of life care.

Key findings were as follows. Senior managers from 30% of Strategic Health Authorities/Health Boards participated in interviews (n=13). Response rate for the PCO survey was 42.8% (51 of 119 sampled PCOs). Participating PCOs in England probably had larger populations and GP practices than average.

6 'experts' in end of life or out of hours care participated in the Expert Panel; including Strategic Health Authority Executive Nurse, Palliative Care Consultant, GP and GP commissioner, PCT Director of Commissioning, Lead Advisers for two national palliative care organisations, Technical Officer and GP out of hours database provider. Project team representation contributed expertise in out of hours and urgent care, primary palliative care, and an expert commissioning perspective. As planned, six service users participated in the ‘Virtual' User Panel: two each with cancer, organ failure and with frailty.

The research has two main findings. Firstly, the importance of considering out of hours end of life care as a complex system which includes aspects of ‘in hours' generalist end of life provision as well out of hours GP, urgent care, nursing and social care, and specialist care services.

Secondly, that there is considerable variation amongst PCOs in England and Scotland in both the type and level of provision of generalist end of life out of hours services and the use of mechanisms to facilitate end of life care.

Progress is still needed to ensure all end of life patients and families receive high quality out of hours care.

Project team

Professor Julia Addington-Hall (University of Southampton)

Dr Karen Gerard (University of Southampton)

Dr Sarah Brien (University of Southampton)

Professor Sally Brailsford (University of Southampton)

Professor Chris Salisbury (University of Bristol)

Dr David Heaney (University of Aberdeen)

Professor Chris Todd (University of Manchester)

Dr Mike Moore (University of Southampton)

Dr Geraldine Leyden (University of Southampton)

Ms Helen England, SDO Management Fellow

Professor Val Lattimer (University of East Anglia)

Funder

National Institute for Health Research
Service Delivery and Organisation Programme

Conferences and events 

Addington-Hall J, Gerard K, Brien S, England H, Salisbury C, Leydon G, Moore M, Brailsford S, Heaney D, Todd C, Lattimer V. Variations in 'out of hours' end of life care service provision across primary care organisations in England and Scotland: the case of nursing care. European Association of Palliative Care, 7th World Congress, Trondheim, 9-11 June, 2012 (Oral presentation).

Addington-Hall J, Gerard K, Brien S, England H, Salisbury C, Leydon G, Moore M, Brailsford S, Heaney D, Todd C, Lattimer V. Variations in 'out of hours' end of life care service provision across primary care organisations in England and Scotland: patient identification, access to care plans and co-ordination of care. European Association of Palliative Care, 7th World Congress, Trondheim, 9-11 June, 2012 (Poster presentation).

End of project report available

NIHR Service Delivery and Organisation programme Research Report 08/1813/259, Feb 2013. http://www.netscc.ac.uk/hsdr/projdetails.php?ref=08-1813-259

Associated research themes

Service access, organisation and delivery

Related research groups

Complex Healthcare Processes
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