The preferred priorities for care document in motor neurone disease: views of bereaved relatives and carers.

Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients' wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients' bereaved relatives' experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

Timelines in the diagnostic evaluation of people with suspected amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND)--a 20-year review: can we do better?

This paper examines diagnostic timelines for people suspected of having ALS/MND over a 20-year period, evaluates the impact of a 'fast track' diagnostic process and discusses typical causes of diagnostic delay. Key diagnostic timelines (dates of first symptom, diagnosis and death) were reviewed for people diagnosed between 1989 and 2008. Patients evaluated through a fast-track diagnostic process and those investigated through traditional neurology clinics were compared. Typical causes of diagnostic delay were investigated. Results showed that diagnostic timelines have been surprisingly consistent over this 20-year period. Time from first symptom to diagnosis hovered around 12 months, with the diagnosis typically being made around the midpoint (50% of total disease duration elapsed) of the disease pathway. The introduction of a fast-track process has not to date affected overall performance but has shortened times from referral to diagnosis. Diagnostic delays appear to be associated with clinical complexity and delays in referral, both within primary and secondary care services. In conclusion, more widespread implementation of fast-track processes could potentially reduce diagnostic delays. Educational interventions among health care professionals both in primary and secondary care may also help shorten diagnostic pathways.