LTNC Research
Integrated services for people with long-term neurological conditions: an evaluation of the National Service Framework

Lead researcher: Prof. Gillian Parker, University of York
Start date: Early 2006
[email protected]

Background: Despite campaigning by people affected by long-term neurological conditions (LTNC) and research evidence, progress towards truly integrated services for people with LTNC has been slow and patchy. 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. However, there is currently 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 project will identify the factors that help or hinder the development of integrated services for people with LTNCs. Once identified, we will design a ‘benchmarking’ system, based on these factors. This will then be used to assess whether the National Service Framework for LTNC has had an impact on the integration of services. ‘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 people/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) experience integration.

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

What we will do and how we will do it:

  • 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 focus will be how services as well as non-specialist services provided by organisations including acute NHS trusts, primary care trusts, local authority social services, independent and voluntary sector service providers and other relevant services.
  • 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.

Project outputs
For the Department of Health, we will write an interim report at the end of stage 1 and a full report at the end of the project. We will also circulate the project findings more widely by writing articles for publication in newsletters or organisations run by people with LTNC, 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 widely.


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