No way in
Including the excluded at the end of life
Jonathan Koffman and Margaret Camps
UK: is there a problem?
Palliative care now encompasses a wide range of specialist services, but commenced in the 1960s with the development of the modern hospice movement by Dame Cicely Saunders when she founded St Christopher's Hospice in Sydenham, London. The number of hospices and specialist palliative care services has increased rapidly since that time. In 1980, there were less than 80 in-patient hospices and 100 home support teams in the UK and the Republic of Ireland. By the end of the millennium, this had increased to 208 in-patient hospices comprising 3209 beds, 412 home care and extended home care support teams, and 243 day care centres (Hospice Information Service 2002). In addition, there are more than 260 hospitals with palliative care nurses or teams and many offer a shared model of care. While the actual supply of specialist palliative care plays a role in determining which patients with progressive disease and their families receive care, concerns have been raised about other factors that influence the accessibility of care at the end of life for those who might benefit from it. In this chapter, we examine the evidence, principally UK-based, to determine in what ways the 'socially excluded' – the poor, older people, people with learning disabilities and mental health problems, Black and minority ethnic communities, asylum seekers and refugees, those within the penal system and drug users – fare with respect to accessing specialist palliative care for advanced disease and at the end of life. While we have limited ourselves to these population groups, other socially excluded sectors of the population are not immune. They include those who are homeless or live in temporary or fragile accommodation, travellers and those who abuse alcohol – and this list is far from exhaustive. To date, however, little attention and therefore published research has focused on either their met or unmet palliative care needs, a testimony to their social distance from the mainstream.