Timely diagnosis of prion disease is vital if appropriate information and psychosocial support is to be made available to patients and families and appropriate arrangements made for symptomatic treatment and provision of palliative care. For many of these issues optimal management remains uncertain. Guidelines have been published by the Creutzfeldt–Jakob disease (CJD) Support Network¹ suggesting that a “carefully co-ordinated multidisciplinary team” is required to provide a “flexible, family-centred approach, with specialist CJD and palliative care services”, with appointment of a keyworker “as soon as possible” to tailor appropriate response. The optimal location of the palliative care is acknowledged to depend on individual circumstances, but it is recognised that “acute neurology or psychiatric units cannot provide the appropriate environment for longer term care”. The guidelines explicitly do not address general palliative nursing care issues.

Most reports on cohorts of patients with prion disease have emanated from national referral centres. However, it is widely accepted that delivery of patient care close to or at home is the ideal. In many cases, this means regional neurological facilities. We undertook an audit of all pathologically confirmed prion disease cases seen in the catchment area of the Walton Centre for Neurology and Neurosurgery (WCNN), a regional neuroscience centre in Liverpool, UK, serving a population of …