The needs for, and experiences of, services by people with LTNCs

Lead Researcher: Prof. Ray Fitzpatrick, Div of Public Health and Primary Healthcare, University of Oxford
Start date: Early 2006. End date: Early 2009
Email: [email protected]


The National Service Framework for Long Term Neurological Conditions (NSF for LTNC) provides the NHS and social services with goals in the form of Quality Requirements (QRs) for services that, if achieved, could substantially improve the quality of life of people with neurological conditions and their carers. We will look for evidence to provide a firm bench mark against which to assess progress in meetings these goals.


To provide a clear quantitative and qualitative evidence base of current patterns of health, quality of life, access to and people’s experiences of services in respect of three progressive neurological conditions: Parkinson’s disease, Multiple Sclerosis and Motor Neurone Disease.

What we will do and how we will do it

The evidence will be gathered by conducting a survey to find out more about the health status, quality of life, perceived need, access to and experience of services from the people concerned (with a total target sample size of 5500). We also hope to identify aspects of services requiring particular attention in the way they are planned and provided in the future. The survey will have a core of universal topics and questions but also condition-specific content.

Before the survey we will need to do three pieces of preparatory work. Firstly, we have to review the latest literature so that the evidence we have can be updated and targeted to the three conditions. This will help to identify the relevant services to focus on in the main survey. Second, qualitative interviews with individuals and their carers will provide evidence to complement survey data. It will identify key experiences to focus on in the survey and help to ensure that potentially difficult-to-reach groups are included. Thirdly, a series of methodological steps are required to develop a robust survey instrument.

The results of the research

The data produced by the study will provide a bench-mark of evidence against which to assess progress in implementing the NSF.  It will also identify specific areas of service that require particular attention. The survey instrument will also be a robust tool for providers, commissioners, charities and other stake-holders to use when they monitor progress in the future.

Progress reports

Winter 2007 Update

We have carried out reviews of evidence about services that are considered appropriate and helpful to individuals with long term conditions. We wanted to have up-to-date evidence, taking account of any developments in services since the publication of the NSF. We have also carried out a series of in-depth interviews with individuals with motor neurone disease, multiple sclerosis or Parkinson’s disease and with a sample of carers. They have helped us see services from their perspectives before drafting the main survey.

We have also invited a group of individuals with one of the key conditions or caring for someone with one of the conditions to form a Research Advisory Group to work with us in the development of the survey. They have met with us from time to time and have also been very active by phone and email as the survey has gone through

various versions. We are now about to pilot the survey via a number of regional branches of charities.

Summer 2008 update

The qualitative interviews are all now finished.  They have involved 271 individuals (116 people with MND, 67 with MS and 88 with PD), as well as  211 carers (104 cared for someone with MND, 38 cared for someone with MS and 69 cared for someone with PD).  Their responses are now being analysed and an interim report is being prepared to go back to the branches of voluntary organisations that have assisted the team. It will also be disseminated through the departmental website ( and discussed with the Research Advisory Group of people with LTNCs and carers to inform subsequent work.

The next stage is to conduct the survey that will build the quantitative evidence and this is due to start in October 2008. The research team has been in discussion with users, particularly via the MND Association, to assess how communication difficulties might affect people’s participation. The main issue being considered is whether email is more user-friendly than postal contact for some respondents.

Further information

Download a PowerPoint presentation User & Carer experience Oct 08 summarising our work to date.

Summer 2009 update

A total of 2563 responses have been obtained to date, of whom 505 were individuals with MND, 1157 individuals with multiple sclerosis and 901 individuals with Parkinson’s disease.  It was agreed with the Motor Neurone Disease Association that a sample of individuals with MND would be recruited separately using their website and electronically based data collection.  It was thought that this might be more convenient for some individuals with MND.  Final numbers from this method of recruitment and data collection have not been collated but this route of recruitment will substantially increase the sample size of respondents with MND.

A total of 1910 carers have responded to the survey.  Of these responses, 434 cared for someone with MND, 721 for someone with MS and 755 for someone with PD.

The next phase is to complete the write-up and analysis of the survey. It will be apparent that analyses will be complex, particularly when we attempt to take account of individuals with conditions linked with the separately reported  experiences of their carers.

Winter 2009 Update

The final report for this study will be available shortly. A powerpoint presentation to the Advisory Group in November 2009 is available to download in PDF format.

Summer 2010

The study is now complete.

The Final Report, Executive Summary and Appendices are available for download.

The report is an output from a research project that was commissioned
by the Department of Health Policy Research Programme based at the National Institute for Health Research  Central Commissioning Facility (NIHR CCF) and funded by the NIHR Service Delivery and Organisation (SDO) programme based at the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) at the University of Southampton. It can also be downloaded from the following address:

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