Background People living with Motor Neurone Disease (MND) frequently have care delivered by a high number of professionals. In the Bradford area, it was recognised that people living with MND did not have a single point of access for care. This was felt to lead to lower quality care through poor coordination and inequity in access to services.
Aim An MND Care Coordinator was appointed at a local hospice, with the aim of establishing a single point of access for patients and families. Additionally, the role aims to increase understanding of MND amongst professionals locally and support the running of the hospice multidisciplinary team clinics.
Methods This work presents findings from the formative evaluation, which utilised in-depth interviews, service data analysis and time-log methods.
Results All new patients have been contacted by the coordinator within two weeks of receipt of referral, with the aim of establishing themselves as their single point of access.
The ability to have more frequent caseload review has allowed for the identification of care needs in a timelier way
Conversations about care for people with MND can be emotive. Due to their clinical experience as a senior nurse, the coordinator has provided appropriate psychological support in conjunction with coordinating care
The coordinator co–organised a professionals MND study day, as well as completing informal MND training to hospice staff and has made improvements to the Multi–Disciplinary Team clinics to encourage a person–centred approach.
Conclusion Evidence to date suggests structures have been put in place to establish the coordinator as a single point of access locally, as well as to support patients, families and other professionals alike. Future evaluation will assess the extent this may have had an impact for people living with MND and their families.
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