Our research

This section contains a brief summary of each piece of research. Fuller details can be accessed by clicking on the heading.

The needs for, and experiences of, services, by individuals with progressive neurological conditions and their carers: a benchmarking study. (2006-2009)

Researcher: Prof. Ray Fitzpatrick: raymond.fitzpatrick@nuffield.ox.ac.uk

This research provided clear quantitative and qualitative evidence relating to three progressive neurological conditions: Parkinson’s Disease (PD), Multiple Sclerosis (MS) and Motor Neurone Disease (MND).  It gives a picture of current patterns of health, quality of life, access and experience of services, for individuals and their carers, so that progress can be measured.

Integrated services for people with long-term neurological conditions: an evaluation of the National Service Framework. (2006-2009)

Researcher: Dr Sylvia Bernard: smb509@york.ac.uk

This three year study investigated the factors that help or hinder the development of integrated services for people with LTNCs. A benchmarking system was then designed, based on these factors, to be used to assess whether the NSF has influenced the way services have been integrated.

Support for carers, particularly those with multiple caring roles: an investigation of support needs and the cost of provision. (2006-2009)

Researcher: Dr Diana Jackson: diana.m.jackson@kcl.ac.uk

The evidence produced by this research increases our understanding of the problems faced by people who care for someone with a LTNC. It aimed to learn from their experiences what has helped, or would have helped, and how much it costs.

Long-term involvement in fitness enablement (LIFE) study. (2006-2009)

Researcher: Dr Helen Dawes: hdawes@brookes.ac.uk

This research established how people would like to be supported to do exercises to keep fit. It gave us information on what community facilities currently exist that people with LTNCs can use, and whether exercise taken in a leisure centre, combined with a physical activity support system (PASS), is effective for people with LTNC.

Transition to adulthood: the experiences and needs of young men with Duchenne Muscular Dystrophy (DMD), and their families. (2006-2008)

Researcher: David Abbott: D.Abbott@bristol.ac.uk

The findings from this two year study told us more about how the experiences, both of young men living with DMD and their carers, could be improved, particularly during their teenage and early adult years.  Lessons were learnt from this research to help other young people living with different LTNCs.

Final report now available; full version and summary

Defining the palliative care needs of people with late-stage Parkinson’s Disease (PD), Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP). (2007-2010)

Researcher: Tariq Saleem: Tariq.Saleem@kcl.ac.uk

Little was known of the experiences and needs of people severely affected by PD, MSA and PSP. Especially the latter two conditions which are quite rare and life limiting. This study helped to identify the most effective approaches to enhancing quality of life for people affected by these conditions. It also considered how flexible and personalised support can be provided in the future.

Review of Epidemiology and Service Use in Rare Long Term neurological conditions (RESULT) study

Researcher: Professor Cath Sackley: c.m.sackley@bham.ac.uk

This study concerned itself with researching the incidence, prevalence and course of rare neurological conditions, and their effects on individuals, their families and the way that services currently support them.  The findings provide information to assist service planning and inform the implementation and audit of the NSF LTNC.

How do carers of people with long term neurological conditions experience the provision of replacement (or respite) care? (2008-2010)

Researcher: Dr Diana Jackson: diana.m.jackson@kcl.ac.uk

This study complemented the carer research and produced information to underpin guidelines on developing flexible services to meet carers’ needs. It examined the concepts of ‘carer’, ‘replacement care’ and ‘respite care’ and had a particular focus on carers from ethnic minorities.  An economic analysis showed the likely cost of providing different models of care.

A case study on the impact of inclusive practice in Neuro-Rehabilitation / Neuro-Psychiatry services (2008-2010)

Researcher facilitator: Dr Tina Cook: tina.cook@northumbria.ac.uk

This research used a ‘facilitated action research’ approach to work with people who use services to find our more about them and to improve practice. It aimed to produce information about how services could be more inclusive and helps to raise awareness about how segregation and exclusion affect people’s ability to reach their potential.

Mapping Vocational Rehabilitation Services for people with Long Term Neurological Conditions

Lead Applicant: Prof. Diana Playford: d.playford@ion.ucl.ac.uk

This study was set up to find out more about specialist vocational rehabilitation services currently available in England. It also provides guidance to commissioners and providers about the barriers and facilitators to establishing successful vocational rehabilitation services.