1 | NIHR158608 | Optimising care pathways in Motor Neurone Disease for family carers: A realist evaluation. | | NIHR (non-ODA) | Research | Active | Health and Social Care Delivery Research | Researcher Led | HSDR Researcher Led | £798,754 | 1 September 2024 | 31 August 2027 | In the United Kingdom about 5000 people have Motor Neurone Disease (MND). The illness affects the brain and nerves. MND patients become unable to move their limbs and develop difficulty speaking, eating, and breathing. There is no cure. Relatives or close friends play an important part in providing care. Many family carers provide over 75 hours care a week. Family carers often have expert knowledge of their relative’s care needs and their specialised equipment, and advocate with care providers especially when the patient finds speaking more difficult. Yet carers say they do not always feel supported in their role.
MND care is provided in the community, in hospitals, in hospices and in care homes. It is usual for several different NHS and private health and social care professionals to repeatedly visit the family home. Some families have a single point of contact at a specialised MND centre with a care coordinator. Others need to self-manage all appointments and care needs themselves. | Background: Motor Neurone Disease is an incurable disease, causing progressive muscle weakness including bulbar and respiratory dysfunction. Symptom burden has different trajectories for patients, but the majority require intensive life sustaining treatments i.e. nutritional and ventilation support. Care is provided by a variety of specialised and general health and social care professionals (HSCPs) through services in community, primary and secondary care. Family carers (FCs) often undertake managerial care helping the person living with MND (plwMND) access and communicate with professionals, and seeking help when unexpected symptom changes occur. They report their ‘expert’ understanding of the needs of plwMND are not acknowledged, and their own needs are not assessed. Care pathways for MND differ greatly across the UK and seem to have differing outcomes for family carers, but it is unclear why this is.
Research question: What works, for whom, how, and in what circumstances for famil | Government/NHS | NHS Norfolk and Waveney Integrated Care Board | NR1 2DH | 52.615 | 1.308 | 624017 | 307071 | England | East of England | Norwich South | Norwich | NHS Norfolk and Waveney Integrated Care Board |