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Community palliative care: the evolving role of Macmillan nurses

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VOL: 97, ISSUE: 12, PAGE NO: 38

Alison Hill, MSc, RGN, DipHV, is service development manager, Macmillan Cancer Relief

The first Macmillan nurse posts were established in 1975 to enhance the quality of palliative care offered in the community. They reflected the Macmillan Cancer Relief charity’s commitment to improving services for cancer patients through specialist practice and the dissemination of skills and knowledge.

The development of the community Macmillan nurse mirrored expansion by hospices to include community palliative care as part of their services, in response to patients wanting a choice about where they die.

The number of Macmillan nurses increased as the success of their role became apparent and as the need for palliative care and cancer support grew in the acute sector. Not only has the incidence of cancer increased as people live longer, but a larger proportion of older people live alone because of their greater degree of mobility. Despite the effectiveness of cancer treatments for some people, many are left with a chronic condition that requires palliative care.

Macmillan nurses are facing a dilemma between patients’ expectations of them and their perception of their own role as a result of national developments in cancer services.


Changes in palliative care

Over the past 10 years there has been an increasing awareness that palliative care as a specialty needs to expand to address the needs of patients other than those with cancer. In 1998 the National Council for Hospice and Specialist Palliative Care Services published a paper stressing the needs of these patients to help providers develop services.

Changes in practice will have implications for workload management and for the knowledge required to provide services to this patient group. It will also have an impact on service development as well as on specialist nurses such as Macmillan nurses. The distinction between palliative and specialist palliative care is outlined in Box 1.

Macmillan nurses - as specialist palliative care providers - will need to ensure that more of their work falls into the non-specialist category than anecdotal evidence suggests is the case. For example, this distinction is important in providing care for nursing home patients. This client group has relatively unidentified palliative care needs (Katz et al, 1999), and in such circumstances palliative carers may need to adopt an advisory and collaborative approach to train and develop nursing staff (Froggatt, 2000).


Recent legislation

In 1995 the Department of Health published A Policy Framework for Commissioning Cancer Services, which emphasises access to specialist services, equity, information and support, and seamless care. The report identifies three settings in which investment should be made to support optimum treatment and care: specialist cancer centres, units offering treatments for common cancers and the community. It states that the cross-boundary working needed for seamless care requires changes to working practice in the community and in acute sectors.

The 1997 white paper The New NHS: Modern, Dependable outlines a commitment to specialist nursing roles, especially those working across boundaries. It gives primary care groups (PCGs) and primary care trusts (PCTs) control over commissioning local health services.

A First Class Service (DoH, 1998) describes the process of clinical governance by which trusts and professionals should manage and monitor their own performance (Box 2), leading to a culture of openness in which people and organisations can learn from their mistakes and improve practice.


The specialist practice debate

The last decade has seen an emphasis on identifying the skills and knowledge nurses need to practise at an advanced and professional level, along with regulation of practitioners to protect the public. Despite a recent consultation exercise by the UKCC on the higher level of practice (1998), there is little clarity on how the professional practice of the Macmillan nurse will develop. The debate has been complicated by the role of the consultant nurse, as outlined in Making a Difference (DoH, 1999). Several posts are being developed in cancer and palliative care, and these innovative roles will also have an impact on Macmillan nurses.


New working relationships

Macmillan nurses need to build more effective relationships with their local PCGs and PCTs. With at least one nurse member on each PCG board, it is imperative that Macmillan nurses make contact with them to set out the nursing perspective on palliative care issues and to ensure their work is on the agenda. Social workers on PCGs may lack experience in palliative care issues and could benefit from the insight of the Macmillan nurse.

Macmillan nurses have had an established capacity in primary health care teams (PHCTs) for over 20 years, yet their role is still not fully understood by many of their colleagues (Barclay, et al, 1999). Macmillan nurses represent the interface between specialist palliative care and other PHCT nurses, including health visitors, community psychiatric nurses and district nurses. This presents an opportunity for dissemination of skills and expertise within nursing.

All sides need an understanding of others’ roles and levels of expertise to determine how the team can work together effectively. In many cases the PHCT has developed a range of skills in palliative care through specific training, and only complex cases need to be referred to the specialist service. In other areas, the development of site-specialist and oncology nurses offering a service to the community will affect both the role of the PHCT and the Macmillan nurse.


Responding to the commissioning agenda

The commissioning agenda influences funding allocation and service delivery. With the erosion of health authorities and the move towards PCTs, commissioning will fall predominantly to a group of doctors who may not understand or be receptive to the role of specialist nurses.

In this situation Macmillan nurses may need to market their services and determine where they fit into a new structure, perhaps after a trust merger.

Influencing the care agenda in the clinical arena is an area in which Macmillan nurses are skilled. These skills need to be broadened to influence those at PCG and PCT level who are developing and commissioning services and to ensure that they have access to information that describes what is unique about a Macmillan service and its specific contribution to a patient’s care.

Those involved in commissioning have to ensure that services are available and must address the specific needs of their population. Macmillan nurses need to be proactive: they have a wealth of information essential to decision-making. Robust data on referral patterns, diagnostic groups and locality-specific information is invaluable to those starting the commissioning process and provides an appropriate mechanism for a clinical nurse specialist to influence care indirectly.

The education and training aspects of the Macmillan nurses’ role are also important and could be overlooked in the effort to demonstrate their clinical value to PCGs and PCTs. Sharing expertise at both a formal and informal level is integral to Macmillan nurses’ practice. It gives them an opportunity to influence the care offered to a large number of patients with less complex needs while concentrating their specialist skills on those with the most complex physical and psychosocial problems. There is some evidence that this has not been entirely successful in terms of skills development in the PHCT (Audit Commission, 1999).


Developing an evidence base

Palliative care has been slow to address issues of audit and quality, arguably because of difficulties in identifying outcomes and also perceived ethical issues with the client group involved. This has affected the development of an evidence base (Higginson, 1995).

All professional groups will be required to take a proactive approach to these issues, demonstrating measurable outcomes and working to develop national best practice.

The role of the specialist palliative nurse is particularly difficult to audit and evaluate: it is difficult to assess contributions to the quality of care that are indirect and involve collaborating with or empowering others. As a result, much evidence of the value of Macmillan nurses is anecdotal (Luthbert and Webber, 1995).

A First Class Service (DoH, 1998) identifies the components of the national service frameworks that will be used by all professionals and trusts as evidence of the quality of their services and as a monitoring tool for performance (Box 2).



The role of the community Macmillan nurse is an integral part of the service offered to cancer and other palliative care patients in the community. It provides a mechanism for influencing the type and quality of specialist care. Changes in the organisation of community services mean that Macmillan nurses will also need a change in their role to ensure their survival in the new climate.

Macmillan nurses need to be flexible and proactive in marketing their services to ensure they demonstrate the value and breadth of their role to commissioning GPs.

They should consider the management implications of earlier referrals, increased involvement with nursing homes and the potential for developing the service for non-malignant conditions. Close and effective links in the multiprofessional community team, with clear understanding of all roles in the care package, will strengthen it. Education and training will continue, with increased specialisation and the need to develop core palliative care approach skills in practitioners.

There will always be a need for specialist clinical practice, and the resulting support offered to patients and colleagues through direct assessment, role modelling and sharing of expertise will be central to community Macmillan nurses.


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