Table 4.

Recommendations arising from the synthesis findings.

Reframing palliative care to the point of diagnosis and ensuring prompt access

Patients and carers need support immediately after receiving the diagnosis, including timely signposting to key sources of information relevant to the individual patient, with repeat signposting through the disease trajectory

Single point of access or a ‘key worker’ to the multi-disciplinary team and focus for all care

Preparation for the next stage of the disease trajectory should take place during the phase before, particularly in relation to the introduction of interventions

Health professionals require support and education to initiate advance care planning early in the disease and to provide support around decision-making at points of deterioration

Any framework for palliative care should incorporate individual variability

Targeted support for carers to relieve excessive strain and fatigue amongst carers of people with MND

Education provision is required to address the lack of knowledge among healthcare professionals in acute and community services of the needs of people with MND. This needs to be balanced against the challenge of the lack of exposure to caring for people with the condition

MND: motor neurone disease.