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Clinical nurse specialists in palliative care. Part 1. A description of the Macmillan Nurse caseloadSheffield Palliative Care Studies Group, University of Sheffield, Sheffield
School of Nursing and Midwifery, University of Southampton, Southampton
Department of Information Studies, University of Sheffield, Sheffield
Centre for Cancer and Palliative Care Studies, Institute of Cancer Research, London
Sheffield Palliative Care Studies Group, University of Sheffield, Sheffield
NHS Cadet Scheme, Florence Nightingale School of Nursing and Midwifery, King's College London, London
Centre for Cancer and Palliative Care Studies, Institute of Cancer Research, London
Sheffield Palliative Care Studies Group, University of Sheffield, Sheffield
Health Services Research Unit, London School of Hygiene and Tropical Medicine, London
Centre for Cancer and Palliative Care Studies, Institute of Cancer Research, London Macmillan Nurses play a significant role in specialist palliative care services in the UK, providing direct and indirect services to patients with complex palliative care needs and to their families. Existing literature shows a developing understanding of the role; however, little detailed data exist regarding the clinical work that they undertake. This paper provides evidence from a major evaluation study, commissioned by Macmillan Cancer Relief. It reports the methods of data collection for the study and then goes on to use data from the evaluation to describe the caseload of Macmillan Nurses. Between September 1998 and October 1999, a team of researchers worked alongside 12 Macmillan teams for a period of 8 weeks with each team. Prospective data were gathered on all new referrals to the services within the 8-week period. This included demographic details, timing of referral, the nature and purpose of contacts, and interventions, recorded from case notes and Macmillan Nurse records. Where possible, a date of death was obtained for all patients. A total of 814 new patients were referred during the study period (range 45– 114 per site). The most common reasons for referral were emotional care for the patient (57%), pain control (27%), and other physical symptoms (33%). Thirteen per cent of the patients referred to the services died within 1 week of referral while 40% died within 6 weeks; thus, a significant proportion of patient work is focused on care at the end of life. It is also noteworthy that one-third of patients were still alive, indicating that some patients are being cared for earlier in the illness trajectory. On average, each new patient referral received two or more ‘face-to-face’ visits and two follow-up phone calls within the 8-week period. It would appear that Macmillan Nurse teams have been successful in getting access to relevant patients. As with any service that provides a complex set of interventions, the Macmillan teams have to adapt and develop the services in each setting. Whilst it is clearly important for the development of a Macmillan service to be tailored to the local conditions, the evidence on diversity suggests that in some cases, stronger guidance, in partnership with both Macmillan Cancer Relief and core providers, may be justified.
Key Words: care trajectory • caseload • interventions • Macmillan Nurse • patient characteristics • specialist palliative care nursing
Palliative Medicine, Vol. 16, No. 4,
285-296 (2002) This article has been cited by other articles:
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