27 November 2024 News
New research by the University of Leicester will examine health and social care services in the UK for families living with motor neurone disease (MND).
The three-year study will be the first to investigate how differing care pathways impact not only an individual but also their wider circle of family and friends who support them.
Supported by £784,000 funding from the National Institute for Health Research and in collaboration with the MND Association, academic and NHS partners, the study will examine the varying ways in which MND care is currently delivered in England and Wales.
Evidence gathered from the study will provide better explanations and understandings of what well co-ordinated care looks like for carers, people with MND and care professionals, and how it is achieved.
There are multiple organisations who prove different elements of MND care - in the community, in hospitals, in hospices and in care homes. It is common for many different NHS and private health and social care professionals to repeatedly visit the family home requiring carers to constantly ‘re-tell their story’ and explain their care needs.
We often hear from carers about the physical and mental strain of caring for someone with MND and we know that high quality, co-ordinated multidisciplinary care has been shown to improve quality of life in MND. This important study will provide valuable insight into carers’ experiences of navigating these often complex care pathways, and we hope will point to improvements in the delivery of care that will maximise choice and control for people with MND and those who care for them.
In the first phase of the study, researchers will review what is already known about how families and health and social care professionals work alongside each other in MND care. Surveys will explore how family carers needs are currently assessed and whether or not they are met.
During the second phase of the study, MND care in five areas across England and Wales will be investigated. Researchers will interview families about their experiences and observe appointments at home and in clinics. Interviews will be conducted with health and social care professionals involved with the families, and those who organise and fund services.
While developing this project we spoke to family carers and all shared powerful accounts of the challenges they faced when supporting their relative with MND, and how the time spent liaising with different health and social care organisation reduced the time they had to simply be with their loved one.
The research, known as the Opti-MND Family Carers Study, began in September is led by a team at the University of Leicester’s School of Health Care and the LOROS Centre for Excellence in Palliative and End of Life Care.
Contacts for further information:
Chief Investigator Dr Linda Birt: [email protected]
Study email: [email protected]