In 2016, twenty people with Motor Neurone Disease (MND) in the Lancashire and South Cumbria region were admitted and died in hospital. Following a meeting in early 2016 with the MND Association, the local hospices were approached to consider how the MND ice bucket challenge money could be utilised for future MND patient support. From this, local MND Association staff met with St John’s Hospice staff to look at how the hospice could support MND patients through our already existing services.
The group looked at the gaps in services and staff knowledge, what causes a crisis leading to hospital admission, and what skills are required to keep people with MND at home, if that is their preferred place of care and death. The main issues often leading to admission were documenting and managing advance care planning; supporting cognitive impairment difficulties; and supporting family carers using practical skills such as taking blood gases, managing non-invasive ventilation (NIV) and using cough assist devices.
For family support and education, the day services team set up a ‘STAR’ group (Support, Time-out, Advice, Recovery: named by the attendees) for people with MND and their main carer. This addressed advance care planning; hospice services and what they can provide; support to carers; nutrition, and speech and language advice. This would run weekly, following on from the quarterly MND clinics, for four weeks. The team also set up a successful MND study day for professionals, which was well evaluated and covered diagnosis, prognosis, and symptom management. The Hospice at Home and ward teams are presently being developed in the practical skills listed above, in order to support people to stay in their own homes when near end of life. An update on this work will be included in the poster.
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