Research Initiative for Long Term Neurological Conditions




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Our people

The project team

The research initiative is managed and overseen by a small staff team, led by The Department of Health and supported by the National Institute for Health Research’s Central Commissioning Facility (NIHR-CCF) and an Advisory Group.

Dr. Carol Lupton

Dr Carol Lupton is currently working in the Policy Research Programme (PRP) at the Department of Health (DH). Within the PRP, Carol is responsible for commissioning research on ageing and older people, long-term conditions and social care for adults as well as for two DH-funded research units: the Personal Social Services Research Unit and the Social Policy Research Unit. She has also contributed to the implementation of the Research Governance Framework in the social care context.

Carol’s main research interest is in the development of innovative social science designs for understanding complex real world situations.

Fahreen Shafiq

Fahreen is programme manager at NIHR’s Central Commissioning Factility.

Maggie Winchcombe OBE, FCOT

Maggie is the Scientific Adviser for this initiative. Amongst other things she liaises between the Department, Advisory Group and research teams to disseminate the results of their research to the world at large. She is an occupational therapist and, from 1983, has worked in the voluntary sector, specialising in information and advice about independent living products for older and disabled people (sometimes called assistive technology).  She has published various articles, reports and good practice guides.  She became a Fellow of the College of Occupational Therapists (2006) and was awarded an OBE in the New Years Honours list, 2007.

Anthony Travis BA, MA

Anthony designs and manages the LTNC web-site, and designs the twice yearly LTNC Newsletter. He is a freelance Voluntary Sector consultant with a special interest in Communications. He has over 30 years of experience, gained in a variety of roles including senior management, in the voluntary, statutory and private sectors. He has worked in and for transport, disability, health and arts organisations. He has also served on Management Committees of both local and national organisations.

Anthony has designed and delivered communications materials (both printed and electronic) for voluntary, statutory and private organisations at local and national level.

Sophie Lederer

Sophie’s role is in the administration of the initiative and she ensures efficient organisation of the meetings and regular mailshots. In the early 1990s Sophie worked as Unit Administrator, in the Social Services Research and Information Unit at the University of Portsmouth.

During this time she also studied for a degree on the University’s Partnership Programme and so, having graduated with a BA Honours in Typographic Design in 1996, left the University to pursue an alternative career in the world of design. Sophie has returned to work with this post after a career break to have a family.

The Advisory Group (in alphabetical order)

The Advisory Group meets twice yearly for the duration of the initiative and members give their time on a voluntary basis.  Sub-groups take on additional work when research is being commissioned and to advise and help the team with communications.

Christine Barton MBE

Lay Member

Christine has worked in the education field and is firmly committed to enabling disadvantaged people to achieve their rights and improve their quality of life. Christine has multiple sclerosis and therefore has extensive personal experience of receiving social care. She hopes that the NSF will provide an opportunity for disabled people to work as equal partners to develop and improve the services that support them and their families.

Marilyn Bentham


Since qualifying as a social worker Marilyn has worked in local government as a care manager with people who have a learning disability before moving into management.  Most recently she has managed a Disability Resource Team which includes occupational therapists and sensory impairment staff, whose remit covers all ages, in addition to specialist care managers who work with people with the most complex needs. She considers herself lucky to have had such broad experience which has enabled her to build up a large network of contacts.

Professor M Anne Chamberlain, OBE

Emeritus Professor of Rehabilitation Medicine, Leeds University

Anne is a professor of Rehabilitation Medicine who has worked in Leeds for 30 years. She has led research on practical rehabilitation problems such as movement, measurement and the ‘Extending Working Life’ programme and continues to be part of the research unit. She is President of The European Academy of Rehabilitation Medicine.

Gillian Chedzoy

Service User

Gillian was diagnosed with multiple sclerosis about 18 years ago. As a Citizens Advice Bureau volunteer she has had the opportunity to observe the effects of disability across a range of issues, particularly financial ones.

Jennifer Francis

Social Care Institute for Excellence

Jennifer has a research background and is currently research analyst in the adults’ directorate at the Social Care Institute for Excellence. Jennifer has over ten years experience of health and social care research and she has particular interest in access to care and support services, outcome measurement and the cost effectiveness of social care. Her role at SCIE involves developing the evidence base for improving social care, engaging with stakeholders to ensure SCIE’s products support the transformation of services and maintaining the rigour and relevance of SCIE’s work by ensuring products are based on the highest possible quality of evidence.

Claire Guy MSc


Claire has a neuro-physiotherapist’s background, having worked with people with spinal injury, MS, Stroke and Brain Injury. Her current position is at the National Spinal Injuries Centre Stoke Mandeville, where she oversees the Rehabilitation Programme.  Claire completed an MSc in Neuro-rehabilitation in 2000 and chairs the Oxford branch of ACPIN (the special interest group of physiotherapists working in neurology).

Conrad Hodgkinson

Lay member

In addition to his role as a carer, Conrad works as a freelance journalist specialising in disability issues and runs the Accessible Property Register, a website promoting accessible and adapted residential property for sale and rent.  He is a member of the Management Committee of Sheffield Carers Centre.

John Holt BSc


John looks after his wife who has had MS for 30 years. He is Secretary of both Newbury & District Branch of the MS Society, and of West Berkshire Neurological Alliance. He was previously a quality assurance consultant and Trade Association Chairman. He is particularly keen that research identifies ways of providing services needed by people with LTNCs that will make it easy for providers to understand the best way to do things and the reasons why.

Beverley Hopcutt

The Department of Health

Beverley’s background is in speech and language therapy, specialising in progressive neurological conditions and critical care. She is seconded to the Department of Health as Clinical Advisor to support implementation of the National Service Framework for Long Term Neurological Conditions, but she combines this role with her work at the Intermediate Neuro-rehabilitation Unit at Manchester Royal Infirmary.

Julia Johnson

Speech and Language Therapist

Julia is the Royal College of Speech and Language Therapy Clinical Adviser for MND and adult neuro-degenerative disorders. She was the therapy representative at the NICE appraisal for the use of Rilutek/Riluzole in the treatment of MND.  Her other research interest has been in the treatment of patients with Parkinson’s Disease and Huntington’s Disease.

Bairbre Kelly

Office of Disability Issues, Department of Work and Pensions

Dr Ghazala Mir


Ghazala is a Senior Research Fellow and Director of the Ethnicity Training Network at the Centre for Health and Social Care, University of Leeds. Her research interests include health inequalities affecting people with learning disabilities and people from minority ethnic communities. She is also involved in studies relating to faith identity and social exclusion.

Claire Moonan

Neurological Alliance

Clare Moonan is the Chief Executive (External) of the Neurological Alliance. She is currently on a part-time secondment from Parkinson’s UK, where she was Health Policy and Campaigns Manager. Clare leads the Alliance’s external activity, focusing on policy and influencing work. She has extensive relevant experience, gathered both in her current role and previously in her work in a PCT.

Maggie Murphy

Occupational Therapist

Maggie qualified as an Occupational Therapist in Salford, in 1991. She has an MSc in Research Methods (King’s College, London) and was awarded a PhD in 2007. Maggie was Head Occupational Therapist for the Neurological Rehabilitation Service in Oxford for eleven years. In 2008 she started working for Buckinghamshire PCT as Team Lead for the Community Neurological Rehabilitation Service. She is an Associate member of the Society for Research in Rehabilitation and a member of the College of Occupational Therapists Specialist Section in Neurology

Sandra Paget

Service User

Sandra has had a rare neurological condition since early childhood.  She was the founder of the former Buckinghamshire Neurological Alliance and was elected to the Executive Committee of The Neurological Alliance to represent Regional Neurological Alliances for the year 2004-2005. She is interested in research and education into “quality of life issues” for people with neurological conditions and how they will participate and influence the implementation of the NSF for LTNCs. She believes that Public Patient Involvement in Health and Social Care research is important.

Richard Parnell, MSc FRSM

Richard has worked in the adult care and disability sector to over twenty years. He also is an Associate Lecturer with the Open University teaching courses on Health and Social Care. Richard sits on two National Institute of Health Research commissioning committees: Research for Patient Benefit and Invention for Innovation. He also works part time for the children’s charity The Adolescent and Children Trust

Bernd Sass

National Centre for Independent Living

Bernd  is Policy and External Relations Manager at the National Centre for Independent Living, a national user-led Pan-disability organisation.  An academic researcher and community theatre director by background, Bernd has previously worked on the Delivering Race Equality Action with the Department of Health prior to mainstreaming recovery-oriented services in an NHS Mental Health Trust.  He has also been a trustee in a local LGBT charity for several years and worked with, and in, children’s and mental health frontline services.

Dr Kate Swinburn

UK Connect

Kate is a speech and language therapist with clinical and research experience who now works exclusively in the voluntary sector. Her role as Research and Development Manager at UK Connect is to develop, coordinate and deliver training to health and social care workers. Kate is the author of The Communication Disability Profile, amongst others.

Professor Alan Thompson

Consultant Neurologist

Alan holds both an academic role and a clinical one at University College London and University College London Hospitals. He is also a National adviser to the MS Society and Vice Chairman of Multiple Sclerosis International Federation Medical Advisory Board.



Final Report

"A Life More Ordinary - an Overview Report" is now available.

Access the Overview Report as web pages from the links below:




Executive Summary


Purpose & Scope of the Research

Key Findings:

The Shape of the Services

The User & Carer Experience

The Cost of Care

Improving outcomes for people with LTNCs

What the research tells us

Building Services for the Future

Conclusions & checklists


Summary checklist for planners and commissioners

Summary checklist for providers and practitioners

Summary checklist for educators

Summary checklist for voluntary and third sector organisations and workforce planners

Reference Materials



Appendix One - Evidence of progress in meeting NSF Quality Requirements

Appendix 2 - Membership of the Advisory Group

Download the full report

Download the Full Report in Microsoft Word Format or as PDF File.

Download an EasyRead summary of the Executive Summary (PDF Format)


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