LTNC Research
The needs and experiences of services by individuals with progressive neurological conditions, and their carers: a benchmarking study

Lead Researcher: Prof. Ray Fitzpatrick, Div of Public Health and Primary Healthcare, University of Oxford
Start date: Early 2006
[email protected]

Background: The National Service Framework for Long Term Neurological Conditions (NSF for LTNC) provides the NHS with goals in the form of quality requirements for services that, if achieved, could very substantially improve the quality of life of individuals with neurological conditions and their carers. We will look for evidence that will provide a firm bench mark against which to assess progress in the implementation of the NSF for LTNC.

Aims: To provide a clear quantitative and qualitative evidence base for the three progressive neurological conditions: Parkinson’s disease, Multiple Sclerosis and Motor Neurone Disease, of current patterns of health, quality of life, access and experience of services for individuals and their carers.

What we will do and how we will do it: We will undertake a survey to obtain clear evidence of health status, quality of life, perceived need, access and experience of services for individuals with three progressive neurological conditions, Parkinson’s disease, multiple sclerosis and motor neurone disease and of their carers (with a total target sample size of 5500). Reported experiences will also identify aspects of services requiring particular attention in the future planning and delivery of services. The Survey will have a core of universal topics and questions but also condition-specific content.

Three pieces of prior preparatory work will be required. Firstly, a review is needed so that evidence provided by the NSF can be updated and targeted to the three conditions to identify evidence-based specific services that need to be a focus in the main survey. Second, qualitative interviews with individuals and their carers will provide evidence to complement survey data, will identify key experiences to focus on in the survey and to ensure that potentially difficult to reach groups are included. Thirdly, a series of methodological steps are required to develop a robust survey instrument.

Project outputs: Data that will provide a bench-mark of evidence against which to assess progress in implementing the NSF but will also identify specific areas of service requiring particular attention. The survey instrument will also be a robust tool for providers, commissioners, charities and other stake-holders to use in future monitoring of progress.


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