Introduction MND is a progressive neurological disorder with an average prognosis of 2–3 years. NICE guidance recommends that Palliative Care specialists play an integral role in the MDT caring for patients with MND. We aim to examine how patients with MND are accessing the hospice IPU and to consider how we could support them further.
Method Retrospective review of the notes of all patients with MND admitted to hospice IPU over the past 2 years.
Results In the past 24 months, 16/861 (2%) of admissions to IPU had MND. However, 9/16 of these admissions were for planned carer respite (service no longer available). Excluding planned respite, all admissions (7 admissions, 5 different patients) were through urgent referrals. Three admissions were for social crisis, where one patient experienced problems with their care provider.
For the remaining admissions (n=4), the average age was 71 years, all admitted urgently from home with advanced disease (average 22 months from diagnosis) with rapidly progressive symptoms. Referrals were either from the MND team (50%) or the hospice Day Therapy Unit (50%). There were no referrals from other services such as hospital or GP. Half had some evidence of Advance Care Planning (ACP) documented prior to admission and all had ACP during admission. All patients died, 3 as inpatients and 1 discharged home for end of life care (EOLC). The time between admission to death ranged from 2–40 days. Two patients required withdrawal of life-prolonging treatment; one withdrawal of NIV and one withdrawal of PEG feeding.
Conclusion All patients admitted (excluding planned respite) were referred to hospice IPU urgently. For 80% this was late in disease and involved EOLC. A new outpatient MND group has been developed to introduce patients with an early diagnosis of MND to the hospice. This may help patients access hospice services sooner.
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