Many neurological conditions have a long term impact on quality of life with varying requirements for care over time. This frequently creates a mismatch between the needs of patients at particular stages in their illness and the available resources required to assist them appropriately. The Neuro LTC project aims to identify the baseline factors that predict everyday care requirements for persons living with a long term neurological condition. It also aims to identify the critical events that can lead to an unplanned increase in care requirements. A better understanding of the factors and events that influence care requirements is essential for decision-making on how to best stratify individuals and allocate them more effectively to available resources.
The research focuses on five neurological conditions: epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, and Parkinson's disease. There are three phases to the research. The first phase is a survey of patients, caregivers and healthcare professionals, which will be carried out from October 2016 to September 2017. The second phase consists of focus groups with patients, caregivers and healthcare professionals and will be carried out between April and August 2017. The third phase is an analysis of hospital and health record data on GP attendances and unplanned hospital admissions for persons with long-term neurological conditions. This quantitative analysis, which will be completed in May 2017, will complement the qualitative data on service user and healthcare professional perspectives. The study expects to report at the end of 2017.
The research team are always keen to hear from anyone living with epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, or Parkinson's disease who would like to participate in the survey and/or focus group. We are also interested in hearing from anyone who cares for a person who has one of these conditions and who would like to take part in the survey and/or focus group. Please contact Sarah Fearn on S.Fearn@soton.ac.uk or 07393 762105 for more information. Information sheets that outline the project’s aims and the relevant details for participants are available to the right of this page.