Out-Of-Hours Palliative Care in the Community Continuing Care for the Dying at Home

Continuing care Out-of-hours palliative for the dying at home care in the community Dr Keri Thomas March 2001 Dr Keri Thomas MB BS DRCOG MRCGP Dip.Pall.Med Macmillan GP Advisor for the Northern Region Macmillan GP Facilitator in Cancer and Palliative Care Dr Keri Thomas has been in general practice for almost 18 years. For the past 10 years she has also worked in local hospices and she gained the Diploma in Palliative Medicine in 1993. In 1998 Dr Thomas was appointed Macmillan GP Facilitator in Cancer and Palliative Care for Calderdale & Kirklees Health Authority, West Yorkshire and more recently Macmillan GP Advisor for the Northern Region. Her particular interest is in improving palliative care in the community and she has been involved in the consultations for the NHS Cancer Plan, Supportive Care Strategy and Community Nursing Education. Published by Macmillan Cancer Relief Author: Dr Keri Thomas Edited by: Dr Helen Charley and Peta Cottee © Macmillan Cancer Relief March 2001 UK Office 89 Albert Embankment London SE1 7UQ Information Line: 0845 601 6161 Registered charity no. 261017 Contents Out-of-hours palliative care in the community Continuing care for the dying at home Foreword Preface Executive summary Introduction page 1 Scope and aims of the report page 2 Current provision page 2 The size of the problem page 2 Organisation of GP out-of-hours service delivery page 3 The needs of patients page 4 Problems and recommendations page 5 Service provision page 5 Communication page 6 Patient and carer support page 7 Medical support and advice page 8 Drugs and equipment page 9 Conclusions page 10 Next steps page 11 Appendix 1 Examples of good practice page 13 Service provision page 14 Communication page 19 Patient and carer support page 23 Medical support and advice page 27 Drugs and equipment page 34 Appendix 2 Provision of drugs page 37 Anticipation of need page 37 On-call pharmacists page 37 Palliative care bags page 38 Controlled drugs page 38 Appendix 3 Further references/sources page 41 Bibliography page 41 Useful reference books page 42 Useful internet sites page 42 Glossary page 43 Appendix 4 Contributors and acknowledgements page 45 Contributors to consultation and forum page 45 Acknowledgements page 46 Out-of-hours palliative care in the community Foreword Foreword Macmillan Cancer Relief has made an enormous guidelines for UK healthcare professionals to contribution to the provision of specialist cancer ensure patients’ wishes regarding their care are care. I am pleased to be associated with this always respected, day or night. report and the awareness it raises of the need to This report demonstrates Macmillan Cancer support people at their most vulnerable – when Relief’s particular expertise, as a widely they are seriously ill. recognised and respected cancer care charity, in The Department of Health’s Out of Hours Review linking healthcare agencies. It will make a vital (October 2000) detailed the many deficiencies in and practical contribution to the existing body of existing care for patients outside normal working knowledge. hours in England, and made more than 20 recommendations. Macmillan Cancer Relief’s own report on out-of-hours care relates a number of the deficiencies identified by the Department of Health’s report to the specific Professor Mike Richards, CBE needs of cancer patients throughout the UK. Even more significantly, it provides practical National Cancer Director Dr K Thomas • March 2001 Macmillan Cancer Relief Out-of-hours palliative care in the community Preface Preface This report, prepared for Macmillan Cancer out-of-hours palliative care for cancer patients. It Relief by Dr Keri Thomas, Macmillan GP Advisor is intended as a framework for action, with for the Northern region and a Macmillan GP emphasis on practical examples that have been Facilitator working in Calderdale and Kirklees, shown to work. has grown out of concerns about the unequal We hope that you will find the report useful, availability of 24-hour palliative care cover for and that it will help to improve outcomes and people affected by cancer. The report is based the quality of life for cancer patients and their on the experiences of many. carers throughout the UK. The report builds on the NHS Cancer Plan for England, launched in September 2000, and also the Department of Health’s own review of out- of-hours cover, published in October 2000. The aim of the report is to suggest ways in Sir Nicholas Young which colleagues in the statutory and voluntary Chief Executive sectors might best work together to improve Macmillan Cancer Relief Dr K Thomas • March 2001 Macmillan Cancer Relief Out-of-hours palliative care in the community Executive summary Executive summary Background Main findings and recommendations ¼ Macmillan Cancer Relief has published this report following a wide consultation with Service provision commissioners and providers of out-of- ¼ Some palliative care patients in the hours palliative care along with patient community are suffering due to an and carer representatives and other unco-ordinated approach to care provision specialist agencies. which has led to inequity of access to ¼ It has been produced in response to generalist and specialist palliative care and consistent feedback, particularly from gaps in provision of palliative care, Macmillan GP Facilitators, that out-of- especially out-of-hours. hours care for dying or seriously ill patients ¼ Improved patient quality of life, carer in the community is at times inadequate. satisfaction and fewer hospital admissions would follow if provision were better planned and organised at both a strategic Scope and aims of the report and operational level. The scope of this report is limited to out-of- Communication hours palliative care services in the community. It ¼ Communication between those caring for aims to patients during working hours and those ¼ Summarise the way out-of-hours palliative working out of hours is often inadequate. care is currently delivered ¼ Transfer of patient information and care to ¼ Demonstrate the need for better out-of- those covering the out-of-hours period is hours palliative care and highlight the vital to ensure continuity of care. inconsistencies in its current provision ¼ Make recommendations for improving Patient and carer support practice in out-of-hours palliative care ¼ Adequate support for carers, or provision provision of full community support where there is ¼ Give examples of good practice in out-of- no carer, is essential for those patients hours care in the community. who wish to remain at home until death. ¼ The report is aimed at all those responsible for Carer education is essential. Healthcare influencing, commissioning and/or providing professionals should also involve carers as out-of-hours palliative care services in the equal members of the team caring for the community. patient at home. ¼ Support can be provided by a combination of statutory, private and voluntary providers but it needs to be proactive and available 24 hours a day to help prevent carer breakdown. Dr K Thomas • March 2001 Macmillan Cancer Relief Out-of-hours palliative care in the community Executive summary ¼ Palliative care patients’ needs can generally be established in advance, which should Recommendation 2 enable out-of-hours care to be delivered Communication speedily and efficiently through direct referral to the appropriate service that can All members of the primary health care meet their needs. team involved in delivering palliative care, in and out of hours, should develop co- Medical support and advice ordinated policies to ensure and improve ¼ There is evidence that symptom control is information transfer within and between not always adequately managed by GPs organisations. Effective information transfer out-of-hours could be facilitated by, for example, a handover form, patient-held records or ¼ Medical advice from a specialist in electronic records. palliative care may not be readily available locally out-of-hours, which can lead to the patient’s symptoms worsening especially over a weekend. Recommendation 3 Drugs and equipment Patient and carer support ¼ There are often problems with the ready availability of drugs, particularly controlled Adequate co-ordinated patient and carer drugs due to current regulations, and support, involving all sectors, should be equipment out-of-hours, which can result provided 24 hours a day with patients, in delays in symptom control. carers and on-call services being able to access services via a single telephone call e.g. to NHS Direct. NHS Direct should be Recommendation 1 able to easily identify calls from palliative Service provision care patients and pass them directly to service providers who can meet their All commissioners and providers should needs. develop, in collaboration, policies and standards for provision of out-of-hours A fully integrated out-of-hours service palliative care, based on local needs should be planned by all PCG/Ts as part of assessment, for their seriously ill/dying their intermediate care provision, possibly patients in the community. co-financed by the statutory (health authorities and social services) and These policies, standards and systems voluntary sectors. This support should should include ¼ be reflected in local plans/strategies ¼ 24-hour district nursing provision (e.g. health improvement programmes), ¼ other co-ordinated community support audited by a named local group (e.g. such as Marie Curie Nurses out-of-hours Provider, PCG/T), and ¼ assessed

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