Table 3.

Participants’ care arrangements

Description of basic care arrangements (not including specialist health services like home ventilation or motor neurone disease nurses)	Number of patients
24 hr care package. Care provided by personal assistants, directly employed by the patient and managed by them	2
24 hr care package. Care provided by a small team of carers employed by a care agency	1
In residential care settings with 24 hr care	2
Agency‐employed carers visiting the house several times a day and for several hours a day. Family (mostly partners) also providing several hours’ care a day. One participant also attended a hospice day centre once a week	4
Most care given by parents, with up to a few hours per week from support workers	3
All care given by partner	1
Most care given by partner, with patient attending a day centre every day	1
Total	14