1.4.1 The cancer services infrastructure
In line with the first principle of the Calman-Hine report (DOH 1995), the fundamental aim of Cancer Networks is to ensure that all patients served by the Network have access to a uniformly high quality of care in the community or hospital wherever they may live. It also aims to ensure the maximum possible cure rates and best quality of life. The Network aims to provide this care as close to the patient‟s home as is compatible with high quality and safe and cost effective treatment. Patients will be genuine partners in their care and treatment. Care will be provided in a fully collaborative disciplinary, multi-professional and multi-agency setting in which all multi-professional and administrative boundaries are invisible to the patient (Local Cancer Network Strategic Review 2003). At present the Cancer Networks do not have a financial budget but feeds into the negotiating bids for funding.
Difficulties arise from the competing targets of hospital Trusts. Locally a substantial proportion of the new cancer monies were not spent on developing cancer services. Of the monies available to the Network in 2001/2 and 2002/3, initial indications show that the actual profile of expenditure on NHS cancer plan developments (including NICE drugs) was half of the total earmarked. There appears to be a deficit within one Trust and cancer monies have been used to address this shortfall. It is difficult for PCT commissioners to support Network-wide developments while one part of the Network is consuming substantial new resources locally. Most of all, it fails to acknowledge the intention that current cancer money is for “new development”, not to prop up budgetary deficits. It fails to address the issue of network-wide decision making and it fails to present the concept of a functioning Network as opposed to funding one local area. (Strategy of one Cancer Network Strategic Review 2003). The House of Commons Committee of Public Accounts reported a review of all cancer networks, major variations in mortality and access to drugs in different parts of England and Wales. The Committee, as part of its role to examine public spending, found 30% of cancer networks assessed did not have comprehensive plans for providing cancer services or monitoring of services against the cancer standards.
The Committee recommends that Strategic Health Authorities should review the effectiveness of cancer networks and put cancer plans in place where necessary (Mayor 2006). As the cancer networks do not have a budget and feed into the trusts business plan other deemed more urgent issues gain the finances such as drugs, personnel or medical devices. The re designing of follow-up to ensure the use of assessment tools for all the team to use to review how people are coping in following cancer treatment appears not a priority. This will be discussed further in the chapter in relation to policy and the reality of what occurs in the clinical area.
1.4.2 The role of the multidisciplinary team (MDT)
The Cancer Plan (2000) led to the development multidisciplinary teams (MDTs) working
across England and Wales. The MDT comprises core professionals: a specialist nurse, a consultant surgeon, a consultant radiologist, a consultant pathologist and a consultant oncologist. Each member of the team has a key role in coordinating the patient‟s pathway through diagnosis and first treatments (CHI/AC 2000).
Along with other important aspects of cancer care there is a need for health professionals to recognize the emotional distress of a cancer diagnosis, treatment and survivorship (Bultz and Carlson 2005). A new document such as the Supportive and Palliative Care (NICE 2004) document begins to standardise support offered to patients. Consequently nurses will be required to provide the additional skills of enablement to this client group and this will necessitate resources and training to facilitate this activity of care. The development of supportive roles in breast cancer care to meet the needs of the users will require education and practice which will need to encompass the complexities of the interventions required and the importance of maintaining a professional role within a supportive and psychological framework.
In line with opinion polls discussed by Small et al. (2000), the first cancer patient survey was undertaken 1999/2000. All NHS Trusts participated, identifying 65,000 patients who responded to the questionnaire. In 2004 The National Audit office commissioned Picker to undertake a similar, but smaller scale, survey to assess whether patients‟ experience of care had changed. Forty three thousand responses were received. Patients surveyed reported better experiences. Arguably the most important single change that has occurred in cancer service delivery over the past decade is the development of MDTs. The sequential development of cancer teams, including clinical nurse specialists, is likely to account for the differential improvements observed in the cancer patients‟ surveys between 2000 and 2004. This suggests that MDT working and the creation of CNS posts has had a marked impact on patient experience (Department of Health 2005b). However,
as Willard and Luker (2005) state from their study, supportive care is clearly important to those suffering from and affected by cancer. However, there appears to be a mismatch between current policy and reality – the reality that emphasises treatment at the expense of supportive care. If the dual demand of current cancer policy is to be met, then the MDT will need to be better resourced and will require better organisational support and guidance on monitoring achievements.
1.4.3 The characteristics of an effective MDT
In the professional relationship between patients and their MDT there are qualities which patients deem to be necessary. Burkitt-Wright, Holcombe and Salmon (2004) found that patients wished to be treated by an expert. However, the need for other attributes as well as being an expert became apparent. The breast cancer patients in the study wanted to have trust in the team caring for them and for the team to have a personality. The consultant should have good eye contact and share conversations on unrelated topics, or perhaps be seen to do something he/she did not have to do. The patients wanted to be treated with respect and not to feel they were an inconvenience (Burkitt-Wright et al.
2004). These important qualities are inherent caring aspects of the MDT. Caring carries a multidimensional set of meanings. When considering a definition of caring, Mayeroff (1972) 'states that „caring‟ for an idea is different from „caring‟ for a person. However, there are similarities in that caring enables the idea or person to grow but that may depend on the commitment of the person who cares towards the other person or idea. In breast cancer follow-up where patients are recovering from an illness, which is synonymous with death, pain, and suffering, emotional distress is demonstrated across the trajectory of the illness. Consequently caring is an imperative part of the treatment (Bultz et al. 2005).
Caring is to be found also in the intellectual and emotional temperament of the person who cares. Those dispositions would involve the facility and use of knowledge in moral values (e.g. honesty) and personal traits such as patience and humility (Mayeroff 1972). Mayeroff
(1972) includes the idea of caring as a task within his overarching ideas of commitment and humanitarianism. Ungerson (1987) suggests that the issues of commitment should be separated from performance of given tasks.
The interconnection between power and caring in the work of health provision has not been adequately explored. The extent to which professional caring might emerge from and be sustained within power relationships requires investigation (Hugman 1991). The delivery of health care is often a social activity due to the relationships which have been developed over time. This is particularly significant in cancer follow-up. An understanding of social processes is paramount in developing services and a framework to support it.
Social change takes place due to attitudes and behaviour influenced by various factors:
age, marriage, type of illness and the changes in illness and treatments. Likewise patients‟ expectations and the organisation and structure of the professions influence social change and health behaviours. The choices in seeking to improve breast cancer follow-up may be influenced by the close relationships within the MDT, by the different roles of its members and by the expectations of patients influenced by sociological factors.
This definition of care and the decisions as to who performs the caring, as well as where it takes place, is fundamental in developing a framework to meet the needs of all the users in breast cancer follow-up. These are interesting challenges and fundamental in supporting patients. The diagnosis of breast cancer as a life threatening illness causes anxiety and fear. Therefore care needs to incorporate a psychological aspect to the treatment and rehabilitation of the breast cancer patient. Walker and Eremin (1995) indicate that psychological factors may play a part in the aetiology and progression of malignant disease. Therefore, given the high prevalence of psychosocial and emotional distress, the essence of caring both physically and psychologically in a structured framework will foster a key element in developing a theoretical framework. Such a
framework is needed to underpin changes in both the clinical construction of follow-up as well as the social organisation of patient care. Salander (2002) analysed written narratives of newly diagnosed cancer patients. The narratives indicated that patients did not focus on communication skills but on various attributes. This emphasizes the need for a caring professional. Jefford and Tatterrsall (2002) discuss the dilemma of cancer patients requiring endless information. However, as Leydon et al (2000) highlight the reason that such an amount of information is needed is to provide some control, trust and hope for patients who have been diagnosed with a life threatening illness.