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 :smb509@york.ac.uk
Background
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.
Aims:
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:
- the support of a neurological interdisciplinary team, working mostly in the community (including people’s own homes) that provides a person-centred service for as long as is needed.
- support from nurse specialists who bring specialist knowledge, know the local system and are able to co-ordinate care within and across different sectors.
- access to a named person, able to co-ordinate care within and across different sectors. (This may be provided as part of the models described above).
- ‘one stop shop’ style community resource centres which can offer peer support, social/leisure opportunities and access to meaningful, creative, learning and/or employment opportunities. They could be provided by statutory, voluntary or other independent sector agencies.
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.
