Research seeks to improve care for families living with Motor Neurone Disease

18 November 2024

Dr Linda Birt, LOROS Associate Professor for Palliative Care and Frailty.

New research being carried out 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. Researchers will determine what works, for whom, how, and in what circumstances.

Evidence gathered from the study will provide better explanations and understandings of what well-coordinated care looks like for carers, patients and care professionals, and how it is achieved.

Led by a team at the University of Leicester's School of Healthcare and the LOROS Centre for Excellence in Palliative and End of Life Care, the Opti-MND Family Carers Study, which began in September 2024, will find out whether different ways of providing MND care can reduce strain on family carers and those living with the condition.

In the United Kingdom about 5000 people are living with MND. The illness affects the brain and nerves; people become unable to move their limbs and develop difficulty speaking, eating, and breathing. There is no cure. Relatives and close friends play an important part in providing care yet say they do not always feel well supported.

There are multiple organisations who prove different elements of MND care - in the community, in hospitals, in hospices and in care homes. This can be physically and mentally exhausting for families to navigate. It is usual 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.

Lead Researcher, Dr Linda Birt said: "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."

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.

Professor Christina Faull, Consultant and Research Lead for the LOROS Centre for Excellence said: "When their loved one is very disabled by MND, families are amazing in coping with the numerous things that need to be done every day. We need to make this is straightforward for them by making professional care wrap around them being easily accessible and well co-ordinated."

The team will also examine whether current ways of measuring health and wellbeing for MND family carers actually reflect the values and needs of those living with the illness.

The study will result in new guidance for those who fund MND care services, organisations working with families, family carers and those living with MND. We are working in collaboration with the MND Association who provide extensive support to families living with MND.

Chris Bennett, Head of Regional Services and Partnerships at the MND Association said: "We 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."