An exploration of the NHS end of life care programme and its potential use for patients with end-stage systemic...

Systemic sclerosis is an autoimmune connective tissue disorder with the highest case-specific mortality of the rheumatic disorders (Denton and Black, 1999). Despite recent developments in the treatment of systemic sclerosis, patients are still dying from its complications. Therefore the palliative care needs of patients with end-stage systemic sclerosis must be considered. There is little research into palliative care for patients with systemic sclerosis, but clinical experience suggests the level of care has been dependent upon local resources and the experience of the team responsible for the patient's care. The need for equitable, high-quality palliative care for patients with end-stage systemic sclerosis may be met by current developments in end of life care within the UK. The present paper outlines the NHS end of life care programme (DoH, 2003; NICE, 2003) and uses a case study approach to illustrate its application to palliative care in end-stage systemic sclerosis.