Palliative Care Social Work: The New Seebohm

Palliative care social work: the new Seebohm? The Frederic Seebohm Memorial Lecture 2004 given at the University of Southampton on the 2nd November 2004 Malcolm Payne Director, Psycho-social and Spiritual Care, St Christopher’s Hospice 51-59 Lawrie Park Road, Sydenham, London SE26 6DZ. Telephone: 020 8768 4500; Email: [email protected] Social work is different in every country of the world, because its role and development responds to the welfare regime of each country. The welfare regime is a political and social settlement between all the stakeholders involved about the priorities and organisation of welfare in any particular country. It comes out of the culture, history and social and philosophical debate going on in any country. There are particular points where the settlement changes in a major way. For social work, the implementation of the Seebohm report (1968) in the early 1970s was one of these changes. It unified specialist local government social services into one general service with wide responsibilities for social care. An earlier point of change was the creation of those specialised local government services out of the Poor Law as part of the welfare state reforms of 1948. Another such point of change in the social work settlement is affecting the UK at present. The argument of this paper is in three parts:
To draw a parallel between the Seebohm reorganisation and current changes in social care;
To show how palliative care social work is an example of the new role of social work in the British welfare regime; and
To argue the importance for every social worker to demonstrate daily through their practice and role in multiprofessional organisations social work role in the new settlement between social care and Britain’s current welfare regime.

Parallels between Seebohm and current changes in social care The Seebohm reorganisation in the early 1970s has been seen as the point at which the modern organisation of social services was created. To social workers at the time, it was more than that. It was the recognition of the coming-of-age of social work as a profession, because social workers attained independent management of a major local government department. The local government and health service reorganisations at the end of this period in 1974 cemented the independent status of social work by creating even larger departments. It placed social services at the top table of the new corporate structure in local government. Then, after a rear-guard action by some social workers, health service re-organisation made health-related social work dependent on these new departments. Health care agencies, such as hospitals, received social services staff by out-posting from social services departments, so that the NHS no longer employed its own social workers. This also cut social workers off from primary care and from direct influence within health care. From then on, social work’s relationship with health care largely relied on the relationship between local

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government social services and the NHS. By establishing a single source for public provision of personal social services, the Seebohm reorganisation also created a focus for any public interest or concern about social care. The current changes in social care, have been going on since the election of the present government in 1997, but have gathered pace over the past two or three years. It started from the government White Paper, that is, a policy statement, Modernising Social Services (DH, 1998). The government’s priorities for children and adults were as follows:
For adults: promoting independence, improving consistency and providing convenient user-centred services;
For children: protection, quality of care and improving life chances. This policy has created:
Developments in service structure that incorporate social services responsibilities into partnership organisations, such as joint trusts between health and social care and education and social care in health and local government authorities;
A registration system for social workers and eventually other employees in social care;
Dissemination of initiatives and information on evidence, innovation and quality;
Developments in social work education particularly at qualifying level, but also affecting post-qualifying work;
Developments in regulation and inspection of services. None of these has been a single reorganisation. They are a rolling progression, allowing a variety of patterns of service organisation to respond to different political preferences (Jordan, 2000). How can the role of a minor social work speciality, palliative care social work, in a minor area of health care be seen as an equivalent of that major structural reorganisation in 1971? There are three points. First, major structural reorganisation is no longer how government services are reformed. Current government is more postmodern in its approach. A more flexible system is being set up in which services respond to people’s needs and wishes developing a range of structures that meet the needs of each area. Success is tested against effectiveness in outcomes against a national assessment of cost and need. Under the new NHS ‘payment by results’ planning structure (DH, 2003), areas of health care are being funded according to national financial and standards objectives. From sometime within the next Parliament, there will be a standard tariff for the costs of palliative care, as for all other health care interventions, and local services will receive incentives to improve on this. So, a major reorganisation has taken place, not as a comprehensive national change, but as local and specialised changes driven by a national agenda. This is similar to much European American changes in public services, but with a British slant, since its policy driver is more highly centralised. Second, for social work, the ambition of the Seebohm idea was to achieve was an integrated personalised response to social needs from one organisational source. However, the focus on social needs emerged from a concern in the 1960s about the

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new phenomenon of youth crime – the rebellious teenager and juvenile delinquent. The answer was a co-ordinated family service (Hall, 1976). However, this best met the need to respond to families with needs around child care and protection. Longterm care for elderly people, effective community support for mentally ill and disabled people were costly and occasionally politically important, but a much weaker focus. At present, the focus is on education and health care, so a focus on social care becomes politically subservient to these major services. The present shift, then, is away from seeing social need as central, and towards a centrality for health care and education. A consequence of this shift is that government fails to look at responding to social issues in a comprehensive way at the local and personal level. This is not new; Richard Crossman, the Secretary of State at the time of the Seebohm reorganisation was largely uninterested in the social services, and the reform was pushed through by a junior minister, Baroness Serota, who happened to have been on the Seebohm Committee (Hall, 1976; Philpot, 1977). This lack of interest also reflects public knowledge of the services and also a poor understanding of what social objectives might be achieved and whether they are actually achieved by the services at present. The third point is that another weakness of the Seebohm reorganisation was that it bureaucratised rather than personalised social care. The problem was that it focused on providing services and regulating social life, rather than liberating people from what oppressed them and helping them grow in their personal and social lives. Providing services and social regulation are important and it is a valid professional achievement to do them well, with discretion and with sensitivity. There have been achievements in effective child protection and in managing young people’s behaviour problems (Pritchard, 2004a,b) and in the development of care management as a way of organising ‘seamless’ services for people with long-term care needs. There are lacunae, things go wrong, but achieving responsive, efficient service provision and protection is important. But, promoting personal and social improvement, collectively and for individuals, cannot be bureaucratically organised. It depends on effective management and service development and provision, but it also depends on sensitive interpersonal care, support, guidance and therapy. Increasingly, small agencies, elements of larger agencies and specialised settings are where this is done. Again, it always was the case. In every large bureaucratic departments there are and always have been pockets of people doing their work to extremely high quality, adventurously, thoughtfully, successfully.

Palliative care social work as a model of the new social work Palliative care is a social service like this, an example of a broad trend in how the practice of the social work profession is developing. There are many other similar examples:
in health care, social work in renal care as in other specialisms, requires detailed specialist understanding and expertise;
in multiprofessional practice in dementia care there have been impressive developments;
in mental health community mental health teams can form successful integrated teams to reach out, sometimes assertively to make sure potentially isolated people receive help;
in forensic social work has developed detailed and careful risk assessment has been a strong achievement;

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in child care advocacy for young people and the developmental work going on in children’s centres has been a significant achievement;
for people with disabilities advocacy and helping people use direct payments as a way of controlling their own lives has liberated many people. The characteristic of these services is that they are:
Small-scale, flexible, responsive to personal needs and choice;
Multiprofessional, so that social work is integrated with other expertise;
Specialised, requiring particular knowledge of social or other needs;
Complex and sometimes involving risk, requiring attention to detail, complex assessment and complex inter-relations between services. For example, a palliative care social work case is Brenda, in her forties and dying of cancer, living at home with her three children, in a chaotic and poor household. The social worker made an assessment. She identified:
extreme financial distress, with thousands of pounds worth of debts, but with Brenda wanting to be rehoused so that family could travel from East Africa, if they could get visas, to care for her children;
care at home: this was being provided by the 21 year old son, who was helping his mother with dressings, on the toilet and with many other personal care tasks;
this son was unable to work, also had financial problems and this was affecting his relationship with his girlfriend;
nurses questioned why the older daughter was unable to help, but she had serious learning difficulties and lived in a social services supported housing scheme; her carers were asking whether or not she should be told of her mother’s impending death, she was already distressed by the illness and mother had provided a great deal of support;
the youngest daughter was missing school, partly because she was helping with caring, partly for reasons of her own;
Brenda feared that her estranged husband would take the younger children back to East Africa when she died, and did not want this and her demand for family to migrate from Africa was one of her answers to this problem;
Brenda’s elderly mother was on her own, because her husband had died, and frail and herself relied on Brenda’s support. Any social worker would recognise this case as typical of many that they deal with in any agency. Different agencies would come at the issues in this family from different points of view: school truancy, young carers, debt problems and eviction, support for the elderly mother. In fact, the only social worker involved in any substantial way was the palliative care social worker. She identified the debts and the elder son who was providing most care as her priorities, but the patient wanted a focus on rehousing, which she saw as producing a family solution, although the social worker could see that there would be immigration and housing department policy issues with this solution. The crucial issue for the social worker was gaining access to the family to meet her agency’s responsibilities, that is, the Hospice’s priorities, but the social work priorities and the patient’s priorities were different. Families with multiple, complex, intractable problems form the main workload of any social worker. These are exactly the families that the Seebohm Report with its

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reorganisation sought to tackle. Social workers are going to continue to tackle this sort of situation from their agency’s base and priorities, but responding also to social and patient or client priorities. Mostly no other profession is going to tackle people in this position. This work is still going to need to be done, and it is going to be done by social workers, even if they are called something else. This work never goes away. Having a department that focuses on social care, therefore, is not crucial to the jobs that social workers do. They can do it, and will have to do it, anywhere. Palliative care is typical of the situation at the moment, with social care part of health and education agencies. These agencies have particular priorities, whether it is a healthcare speciality like renal care, or dealing with learning problems or mental health problems in concert with community learning disabilities or mental health trusts. Palliative care is the new Seebohm because the government’s priority has been effective health care and education. Social care has to be part of that, so tackling its role from those new perspectives.

Identifying social objectives as a priority What does this mean, then, for social work? The third part of this paper focuses on the importance of clarity about what social work is, how effective it may be, and demonstrating that within the new joint environments. There is tremendous good will from multiprofessional colleagues, but the task of demonstrating effectiveness must lie with social workers themselves. That means, daily, demonstrating both:
how practice can contribute to health care priorities, in the case of palliative care social work; and also
how important social priorities are. In addition to demonstrating this in practice, social workers also have to demonstrate it by research and audit. Sheldon’s (1997) Psychosocial Palliative Care: Good Practice in the Care of the Dying and Bereaved, a ‘core textbook in the field’ as Monroe (2004) described it, is a good example of the detailed integration of practice experience, wisdom and research effectiveness. It also connects the personal with the political. An example is a useful beginning. Doctors at St Christopher's Hospice have difficulty in negotiating with families about discharge. Most people can imagine how difficult this is for families, because they fear eating up all the patient’s financial resources in care costs, or they fear the burden on them of caring at home. They had hoped that inpatient care in a hospice was the answer. Their feelings are often not helped by the good quality of the care that we provide in palliative care; they would rather stay in the hospice. Palliative care social workers have helped with some of these problems with our efforts both in campaigning and everyday work to ensure that NHS ‘continuing care’ funding works properly for our patients; the Ombudsman’s decisions have strengthened our hand. This means that we can often ‘name the problem’ of fear of financial loss with our patients, and in turn take away one of the sources of resistance that family members may have, but which they often dislike voicing. Similarly, a good social work assessment that really looks at the experience of carers, and good interventions to support carers can help families at the end of their tether who want to carry on providing care themselves. But, this work is well done, evidence of patient need is also produced that would influence public opinion and staff in primary care trusts that commission services to

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understand that patients are entitled to make the choice for longer stays in the hospice. There is a good case for this political message. If people in the community heard that NHS policies were forcing hospices to send out people from hospice care and burden their carers at home, commissioners would be forced to fall into line. However, detailed and careful work is required to make the point: a social work assessment and clearly focused practice. The second point is that it is social workers’ daily task to incorporate social objectives into health care, and all the other settings in which we undertake the new Seebohm practice. Doctors, nurses, psychologists, therapists of all kinds are focused on patient care, and see our contribution as:
removing barriers to effective patient care;
enhancing patient care where there are social issues to be addressed. The objectives and focus of social work in the International Federation of Social Work’s (2000) definition of social work, however, contain broader social objectives. It says: The social work profession promotes social change, problem solving in human relationships and the empowerment and liberation of people to enhance well-being. Utilising theories of human behaviour and social systems, social work intervenes at the points where people interact with their environments. Principles of human rights and social justice are fundamental to social work. The implication of this definition is that social work links both the psychological and the social in practice. Bereavement care is not just counselling people about their distress, but also are responding to a mass of social issues that people in bereavement face. The example of Brenda and her family and all the different aspects of social concern that a bereavement worker will have to tackle makes this point. Counselling about feelings of loss is only a small part of it. Trying to achieve social justice and human rights certainly do mean seeking to remove barriers to effective health care, but they mean far more than this. For example, they mean making sure that agencies and teams think all the time about social factors that get in the way of equal treatment in receiving health care and palliative care. Monroe and Oliviere’s (2004) recent edited collection focuses on such practice. Trying to enhance well-being and help liberate people to grow is a much wider objective than many of those implied by medical and nursing care. This is not a matter of broad principles and ideals, but also of attention to detail in formulating clear objectives. The problem of many of the services in which social care is the junior partner is that they are not aware of and have no experience in formulating social objectives. This is apparent in the NICE (2004) manual of guidance on palliative and supportive care for adults with cancer. NICE would not think to recommend the use of a medication without clear protocols around its administration, safety considerations, indications and contraindications and other matters. It does not set the same requirements for things like ‘social support’; these are present in the document but they go undefined.

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Social workers have the skills and knowledge to define social objectives within palliative care. Moreover, it is important to do so clearly in order to gain support and understanding for social work as an aspect of palliative care. For example, one of the well-understood aims of palliative day care is respite for carers. Looking at this more closely, what does the respite consist of? A carer may prefer to have a spouse with little life left to live at home. If they are exhausted by getting them off in the transport in the morning, does the respite benefit them? If they have nobody to accompany them for safety or comfort to visit the shops, what relief is it? Respite for a carer is not achieved simply by removal of the patient from their care, but by a careful assessment of what, given that precondition of the patient’s absence, will give respite and then delivering the help that will achieve the outcomes that the assessment sets. If good social assessment and providing good support services is essential to defining social aims and getting them incorporated into health care, is social work in the right position to achieve this input? Social work in health care has been secondary in the priorities of politicians from Richard Crossman onwards, in the minds of the public and in the understanding of doctors means being careful to establish social work in palliative care. To achieve social objectives for people receiving palliative care, social workers will need to work hard to establish their role not only in practice and through research, but by working to establish a position at the centre of palliative care. The importance of doing so is clear when we look at the changes being established in health care organisation at the moment. Just after the NICE guidance manual (NICE, 2004) was published, an economic assessment of the costs of implementing it (Ward et al, 2004). Prepared by the School of Health and Related Research at the University of Sheffield, it works out a costing for the various elements of the NICE guidance. This document is recommended to health commissioners as a basis for working out the costs of services, and its assumptions are likely to set the starting point for commissioners in deciding levels and types of service. Since the NICE manual covers social work, the Economic Review will also set the basis for social work. If the review and assumptions are right, they can be used with funders of palliative care to argue for appropriate costs to be paid for; if they are wrong, they need to be challenged quickly, otherwise they will become accepted norms. The information has been used, for example, as the basis for a publication by National Council for Hospice and Specialist Palliative Care Services on population-based needs assessment (Tebbit, 2004). This gives guidance to cancer networks on how to decide the needs of their particular population.

Social work in ScHARR A lot of the NICE guidance is concerned with the ability of all staff to respond to needs that do not require a specialist worker, either by referring people on or by providing general support. The ScHARR document (Ward et al, 2004) examines a number of elements of service for cancer patients that would be undertaken by social workers and it lists six of these:
Undertaking social care assessments;
Benefits and welfare rights advice;
Bereavement counselling;
General counselling;

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Professional psychological assessment, intervention and support at levels 1, 2 and 3 (not requiring a qualified psychologist);
Care of families and children. Providing for these should be included within the general costs of specialist palliative care, but it is stated that only social workers can do much of the work involved in social care assessments, and the social work service will do all of benefits and welfare rights advice. Services that straddle both health and social care, such as respite care, are not counted in the costing, so where these are organised by social workers in the hospice, they could argue for extra financial provision for this. For example, level 3 of psychological care is for specialised counselling and a typical cancer network serving 1.5m population would require one person. If this service is provided by social workers, the cost of this counsellor should be directed towards the social work service. All this information provides an argument for what palliative care provision should be and, if social workers in the multiprofessional team do this, or part of this, provides an argument for it to be funded from the general costs, not from the special funding for social work. Social support ‘Social support’ includes a number of activities. This is worked out on an average for a cancer network with a population of 1.5m and having the average of 3,600 cancer deaths. Table 1 Requirements for social support Activity SPC beds Day care Home care Bereavement Care assessments Total Source: Ward et al (2004)

Assumption 0.8 wte/17 beds 1 sw session/week 0.8 wte 0.6 wte/300 clients (35% patients) 4.3wte

Required 1.6 0.5 0.8 4.2 4.3 11.4

The document seems partly to confuse care assessments for packages of community services for palliative care patients, and broader social work assessments. It also does not distinguish clearly between patients and the larger number of family members that might be served by a bereavement service. For example, Brenda’s family would require a number of different kinds of bereavements intervention. However, it assumes that 50% of patients will require specialist social care assessments, including welfare rights assessments, for community services and that specialist palliative care services will require additional work. It allocates an average of 5 hours for each patient for the assessments. Seven hours were the required for establishing a full range of community services, but many cases did not go this far and less extensive work was done. Most palliative care patients are eligible for NHS ‘continuing care’ funding, and require nursing assessments. However, this does not alter the fact that the social care elements of the provision still have to be assessed and negotiated. For example, an inpatient in a hospice who was admitted from their own home and is being discharged

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to a nursing home will probably receive nursing ‘continuing care’ assessment. However, there will be many social elements to the assessment, and probably the patient and family will need discussion about their feelings about the decision never to return home and about the practical consequences of disposing of property, pets and many other aspects of the situation. In every case, therefore social workers should look at the detail of what is required, and where a social work task lies, identify the amount and quality of work required from or undertaken by social workers. How this works out will vary in different services, because social workers will have taken up differing roles. Bereavement service Bereavement service is considered in the ScHARR document (Ward et al, 2004) at three levels:
general information for all bereaved people;
bereavement support;
specialist counselling/psychological help. In the ScHARR model, information and specialist counselling components of a bereavement service are included in the general costings for information services and specialist counselling and psychological help. Again, what is done by social workers should be extracted from general funding for this purpose. The document assumes that in a typical area there will be six providers. Level 2 would require, for a service covering such an area, the provision in Table 2. The counsellor is in addition to the counselling required for psychological support, and in addition to bereavement support provided by volunteers led by social workers, which is included in the analysis of social support (Table 1). Table 2 Staffing requirements for a bereavement service Service component

Assumption

Services Lead

1 large, 5 small 1 for large services (200 plus); 0.75 for small services 0.6 large services; 0.4 small services 1 large services 0.6 small services

Counsellor (complex cases) Admin support

Total Source: Ward et al (2004)

Required, average cancer network Large Small 1 5 1 3.75

0.6

3

1

3

2.6

9.75

Other aspects of service Finally, in examining analyses like this, it is important to explore the assumptions made. For example, the salary for a social worker is set at a fairly low grade, assuming that the main role is routine assessment and organising care packages. It is also stated at 2001 figures. Many palliative care social workers are expected to work at a high rather than basic level of practice for much of their work, and arguments for higher grades might be relevant. Careful reading of the document reveals issues that

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might be taken up by social workers on behalf of their services. For example, the document reveals evidence that a high-quality bereavement service reduces the cost of primary health care, but does not attempt to include the cost savings to health care commissioners. It refers to the 5-hour estimate of the time required to carry out a social care assessment as the ‘minimum time required’ (T11n) but then proceeds to take this as the costing; it might be possible to argue for more than the minimum. Another assumption is that level 3 of a psychological service would be provided by a trained and accredited counsellor, using a theoretically explicit model of practice: two examples are given, cognitive-behavioural therapy and solution-focused therapy. However, social work staff providing counselling might well be able to argue that they provide this level of psychological support, and they could point to other explicit models of counselling. Another assumption is that a strategic lead on families and carers work for a network should also do counselling and other clinical work, and that each unit would also have 0.5 fte posts doing such work. We should question this infinitesimally small provision for work with carers, particularly since the NICE guidelines assume that carers will receive much improved consideration and assessment. Finally, in addition to the elements of costing focused on social work roles, looking at the ScHARR document (Ward et al, 2003) reveals costings for
training in communication and other skills;
information provision;
organising user involvement;
providing interpreters and other help for people with disabilities;
responding to particular social and other needs and translation for people from minority ethnic groups;
providing spiritual care; and
providing rehabilitation for patients. Social workers often play a role in aspects of these services, and should argue for the costs necessary to carry out these roles, especially where a specialist provider is absent. For example, where there is no chaplain, more complex spiritual care counselling often falls to social workers. There are also gaps. The NICE guidelines, and hence the ScHARR document refer only to cancer services for an average population. Where services are provided for other patient groups, additional funding would be necessary. This could not be sought for in-patient services, where other patients might substitute for cancer patients. Over the next few years, however, we expect services to be expanding to other groups more generally, while the population with cancer still requires their services. Documents such as the ScHARR analysis (Ward et al, 2004) are rich sources of information about factors influencing the assumptions of funders and commissioners of services. They can be used in three ways:
to show what the role of social work should be or is;
to argue that it should be properly funded;
to provide evidence of assumptions made that can be challenged. On the role of social work, the argument might be: ‘you should be providing this’ or ‘we’re doing this job’. On the costs, it might be: ‘you should be paying properly for this’. On assumptions, the argument might be: ‘our special experience and expertise tells us that you should think about this’. Often, documents such as these are

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presented to social workers as irrefutable technical guidance that they must fall into line behind. Experience and expertise make it possible to challenge them, based on the detailed work of looking at what lies behind them and what is missing from them.

Conclusion This paper argues that there is a reorganisation going on. It does involve changes of structure, just as the Seebohm reorganisation did in 1971, but these are rolling changes in which structural change is interweaved with political and social change. One view of what is going on is that it is a fragmentation of what social work achieved in the Seebohm reorganisation: a focus and structure for implementing social care objectives. But the experience of the Seebohm structure has been mixed, and a more flexible form of services with a different focus better meets present-day political and social priorities. The work that social workers do and the needs that they meet never go away; they are just as complex and deep-seated as they were in the 1970s. Palliative care social work implements the practice of social work in the flexible, multiprofessional world of the early 21st century. This means that social work practice and social objectives have to be incorporated into services with other priorities in a complex way. This paper argues for the approach of integrating deep practice experience, with creative wisdom and thoughtful, well-constructed research into daily demonstration of effective practice and daily commitment to the political achievement of the aims of social work.

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