(1) Individuals with a diagnosis of one of the following neurological conditions - epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, or Parkinson's disease and/or their carer. (2) Individuals will be included who also have a secondary diagnosis but for whom one of the above conditions is the condition that is most influential in determining their care requirements and/or their carer. (3) Individuals who are capable of giving informed consent. (4) Individuals who are able to understand the study participant information sheet.
(1) Individuals who do not meet the inclusion criteria. (2) Individuals who are unable to understand the study participant information sheet or unable to give informed consent.
Many conditions involving the nervous system have a long-term impact on quality of life, and needs for treatment and care vary over time. There is often a a mismatch between the needs of patients at different stages in their illness, and the clinical and social care support services needed to help them properly. This project aims to gather data to better understand care needs for five major neurological conditions: multiple sclerosis, epilepsy, Huntington’s disease, motor neurone disease, and Parkinson’s disease. We wish to identify factors that predict care needs, and the various problems (critical events) that might lead to an increase in these needs for the five conditions. We are particularly interested in the extent, and the impact, of fatigue on the care needs of people with long-term neurological conditions. The study will involve the use of surveys and focus groups with service users (patients and caregivers). By identifying the baseline factors predicting care need, events that increase this need, and the features of fatigue that influence personal care needs, the study aims to improve efforts to work out who needs higher levels of support, and how best to match this need to service delivery.
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