About the research

This section contains a brief summary of each piece of research. Fuller details can be accessed by clicking the relevant link in the sidebar.

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: [email protected]

This research will provide clear quantitative and qualitative evidence relating to three progressive neurological conditions: Parkinson’s Disease (PD), Multiple Sclerosis (MS) and Motor Neurone Disease (MND).  It will give us 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: [email protected]

This three year study will investigate what factors help or hinder the development of integrated services for people with LTNCs. Then, a benchmarking system will be designed, based on these factors, which will 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: [email protected]

The evidence produced by this research will increase our understanding of the problems faced by people who care for someone with a LTNC, in order 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: [email protected]

This research will help to establish how people would like to be supported to do exercises to keep fit. It will give 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: [email protected]

The findings from this two year study will tell us more about how the experiences of young men living with DMD, and those of their carers, can be improved, particularly during their teenage and early adult years.  It is hoped that lessons can be 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: [email protected]

Little is 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 will help to identify the most effective approaches to enhancing quality of life for people affected by these conditions and how flexible and personalised support can be provided in the future.

The Quality Neurology Project (2007 – 2009)

Project Co-ordinator: Alun Davies: [email protected]

The MS Society, Parkinsons Disease Society, Motor Neurone Disease Association and Ataxia UK have joined forces to develop a way of measuring how services are meeting the Quality Requirements of the NSF for Long Term Neurological Conditions. The project is run in collaboration with the ‘Integrated Services’ research team at York University

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

Researcher: Professor Cath Sackley: [email protected]

More is needed about 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 will 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: [email protected]

This study complements the carer research and will produce information to underpin guidelines on developing flexible services to meet carers’ needs. It will examine the concepts of ‘carer’, ‘replacement care’ and ‘respite care’ and have a particular focus on carers from ethnic minorities.  An economic analysis will show 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: [email protected]

This research uses a ‘facilitated action research’ approach to work with people who use services to find our more about them and to improve practice. It aims to produce information about how services could be more inclusive and will help 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: [email protected]

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


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