Evaluation of the NSF for integrated services for people with LTNCs

Lead Researcher: Prof. Gillian Parker, Director SPRU, York University
Start date: Early 2006. End date: Mid 2009
For email correspondence contact Sylvia Barnard :[email protected]


The National Service Framework (NSF) for LTNC encourages service providers to review how they work together, and tries to promote better integration between specialist and non-specialist services within the NHS, social services, other services and the voluntary or independent sectors. Progress in this area has been slow and patchy despite campaigning by people affected by LTNCs and research evidence that supports the concept. Also, there is little guidance about what might help organisations to integrate their services more effectively, or any consistent way of assessing whether they have done so.


This research will identify the factors that help or hinder the development of integrated services for people with LTNCs. We will then use this information to design a ‘benchmarking’ system which can be used to assess whether the NSF has affected the process of integration. ‘Benchmarking’ is a way of making comparisons between services in order to identify the best way of doing something; it is seen as an effective way of improving public services.
A key question will be how many different people with LTNCs (men/women; older  or younger people; people from ethnic communities etc) and people with different types of LTNCs (present since childhood or not; in the early or later stages; whether progressive or stable; whether common or rare) receive services that have been integrated.

What we will do and how we will do it:

People affected by a LTNC (including both service users and carers) and their organisations will be full partners in the proposed research. They will oversee the project throughout.

We will review existing research evidence about integrated services. At the same time, we will speak to people with LTNCs, carers and relevant professionals in order to identify the factors that they believe are most important in creating well-integrated services.

We will select six areas from across England and undertake detailed studies of services for people with LTNC in each. The services will be selected to represent a range of degrees of integration. They will also be chosen to represent different degrees of specialisation (eg single disease services vs generic neurological services), different geography (eg rural vs urban) and difference in ethnic mix of the population.

We will use findings from stages 1 and 2 to develop a set of benchmarks and a brief questionnaire based on them. We will send this to all specialist neurology departments and all primary care trusts in England. The results will provide a national picture of how integrated services (for people with LTNC) are.

After 12 months we will revisit the case study areas and repeat the national questionnaire, to see whether the National Service Framework for LTNC is influencing how services are integrated.

The results of the research

The Department of Health will receive an interim report at the end of stage 1 and a full report at the end of the project. We will also circulate our findings more widely by writing articles for publication in newsletters or organisations run by people with LTNCs, in magazines aimed at health and social care professionals, and in academic journals. We will also produce a short summary of project findings and distribute this as widely as possible.


Progress Reports

Winter 2007 Update

Over the last six months, work has focused on the scoping phase of the project and gaining the appropriate ethical and research and development approval for fieldwork in case study areas.
A range of interviews with people with LTNCs, their representative organisations, informal carers, and health and social care professionals have been completed and analysed. These have informed both an understanding of the factors which appear to help or hinder the development of integrated services for people with LTNCs, and the selection of six geographical areas which will act as case studies for the next phase of the project. The second element of the scoping phase, the systematic literature review is ongoing. A draft publication reporting some of the preliminary findings from the scoping work has been prepared and it is hoped to disseminate this early in 2008.
Six Primary Care Trust areas have been recruited for in-depth case-studies of their neurology ‘service systems’. Initial mapping work has begun and interviews in these areas will be the main focus of activity over the coming months. The results from this stage will be placed alongside findings from stage one to strengthen the development of key indicators of good practice and develop ‘benchmarks’. In parallel, we are working in partnership with a group of neurological charities to develop the audit tool ‘Quality Neurology’.

Summer 2008 update:

The literature searches have been completed. The final number of papers from which data were extracted for the review is 46 evaluations, with 88 descriptions. Analysis of this material is currently underway.  In addition, the case study fieldwork is progressing, with 139 staff interviews and 59 service-user interviews, across six sites, having been completed at the time of writing.  There continues to be ongoing collaboration with the Quality Neurology project team.
The team reported their initial findings to their Project Advisory Group this summer for discussion and advice on proceeding with the next stage of work.  A report on the initial findings is planned for Autumn 2008. Analysis of the case study fieldwork will identify benchmarks of good practice for continuity of care, which will inform the design of the questionnaire for the national survey.

Further information

Download a PowerPoint presentation Service Integration Oct 08 summarising our work to date.

Summer 2009 update

Analyses of case study material have identified key service models that improve continuity of care for people with LTNCs and a number of other issues which are also important in their experience of integrated care.
Evidence from our research suggests that people with LTNCs value:

As well as the service models described above, our research shows that being able to access a number of other services and information on an ongoing basis is important to ensuring people with long term neurological conditions experience continuity of care. In particular, ongoing access to neuro-physiotherapy, speech and language therapy, psychological support, information and advice are important.

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 Full Report, Executive Summary, Technical Report and Appendices are now available for download.

This document 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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