Objectives An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input.3 The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers.
Methods A 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland.
Results The response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years.
Conclusions A minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.
- motor neuron disease
- pulmonary ventilation
- hospice care
- neurological conditions
- terminal care
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