Background and introduction With DMD patients now living in to their 30’s, there is a greater need for them to transition into adult services. Given their needs are often similar to MND patients, looking at barriers to hospice admissions for both these groups could help provide indicators for service development.
Methods All UK hospices were contacted with the following survey either in person, telephone, email or using the enquiry form on their webpage:
Do you take Motor Neurone Disease Patients?
What are the barriers to admitting such patients?
Do you take patients with Duchenne’s Muscular Dystrophy?
What are the barriers to admitting these patients?
Do you take patients on NIV?
What training do staff have on using NIV?
Results 78 responses from 191 hospices. 98.7% admitted MND patients and 93.6% would admit DMD patients; however 51.3% had not had any referrals for DMD.
Barriers were identified as challenges rather than barriers. The top four for each group were:
1. Staffing levels and high dependency
3a. Bed availability
3b. Difficulty managing their needs
1. Patients remaining under children’s services/difficulty with transition
2. Difficulties managing their needs
3a. Not being referred
3b. No respite in adult hospices
93.6% of hospices would admit patients on NIV, but most of them often found this challenging and wouldn’t start NIV or amend the settings; staff of only 23% had formal training on NIV.
Conclusions While it’s difficult to provide answers for wider service issues like staffing and bed availability, we need to be providing increased services for transitioning DMD patients into adult care. Commonly hospice’s were worried about the complexity of care that these patients require, including familiarity with equipment and use of NIV. Going forward, it is necessary to work with children’s services to develop learning packages for adult hospices to feel more comfortable with these admissions.
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