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PB-PG-0706-10369
Optimisation of services for the care of people with Motor Neurone Disease (MND), based on an understanding of personal experience of MND in Lancashire and South Cumbria.
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£144,949
9 January 2008
8 July 2010
MND results in profound limb weakness, speech, swallowing and breathing difficulties and has an average time from diagnosis to death of 14 months. As a result, people with MND have varied and complex needs, requiring input from a wide range of health, social and palliative care services. People with MND face many of the same problems as those affected by more frequently occurring illnesses, but in a much shorter timeframe. Health, social and palliative care service provision for MND can therefore legitimately be viewed as a model for other conditions. Government policy has stressed that services should be focussed on the needs of patients. This study will assess the extent to which the changing needs of people with MND are being met by health services during the course of their illness. The aims of the study are: Produce an accurate description of the MND population of Lancashire and South Cumbria regarding the level of disability, dependency, need for and availability of equipment
BackgroundMotor Neurone Disease results in weakness and wasting of the muscles, loss of mobility and difficulty with speech, swallowing and breathing, often compounded by psychological effects. People with MND, therefore, have varied and complex needs, requiring input from a wide range of health, social and palliative care services as their condition progresses. Research has shown that these needs are not always met. Service provision for MND can be viewed as an exemplar for other conditions as people with MND face many of the same problems experienced in more common conditions, but within a relatively short timeframe due to the rapidly progressive nature of the illness. Few studies have attempted to really explore the lived experiences of those affected by MND using in-depth qualitative methods.AimsThe study aims to use qualitative research methods e.g. in-depth tape recorded interviews and diaries to generate illness narratives to explore the personal experiences and perceptions of t
Government/NHS
Lancashire Teaching Hospitals NHS Foundation Trust
PR2 9HT
53.792
-2.707
353495
433014
England
North West
Wyre and Preston North
Preston
NHS Lancashire and South Cumbria Integrated Care Board
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