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The LTNC Project - staff & advisory group
Introducing the project team:
Phpto of Carol LuptonDr Carol Lupton
Policy Research Programme,
The Department of Health
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 is also working on the implementation of the Research Governance Framework in the social care context.
Before joining DH, Carol was Director of an applied policy research unit, where she worked on a range of studies in the health and social care field. Her main research interest is in the development of innovative social science designs for understanding complex real world situations.
photo of Maggie WinchcombeMaggie Winchcombe, F.C.O.T
Scientific Adviser
Maggie’s role as Scientific Adviser is to liaise between the Department of Health and the research communities involved in the programme and to disseminate the results of their research to the practitioner and service user groups who need to know about it.
Maggie qualified as an occupational therapist in the early 1970s and from 1983 has worked in the voluntary sector, specialising in disability equipment information and advice; first locally, and then at regional and national levels. She has published a number of articles, reports and good practice guides relating to the disability equipment field.
In 2003 she left the voluntary sector to work independently. She became a Fellow of The College of Occupational Therapists in January 2006.
photo of Anthony TravisAnthony Travis
Communications
Anthony Travis is a freelance Voluntary Sector consultant with a special interest in Communications. He has over 25 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.
He has direct experience of designing and managing projects, (including consultations and feasibility studies) and developing major grant applications for local and national voluntary and statutory organisations.

Photo of Sophie LedererSophie Lederer
Administration
Sophie worked for seven years, 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.
Having worked for a design agency and then an event marketing company, Sophie took time out to be a full-time mother to her two children. After a near seven year break, broken only by a brief stint at part-time teaching in Adult Education, Sophie is making a return to work on a part-time basis with this post.

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Introducing the Advisory Group for the Initiative (in alphabetical order):
Christine Barton MBE
Service User

Christine has had a career as a teacher and lecturer, retiring from work as an education adviser to 1993. She is firmly committed to enabling disadvantaged people to achieve their rights and improve their quality of life.
Christine has multiple sclerosis and therefore personal experience of receiving social care. She is Chair of Inclusive Living Sheffield Ltd, a Council Member of the General Social Care Council, a Trustee of Voluntary Action Sheffield and a director of the Accessible Property Register Ltd. She hopes that the National Service Framework will provide an opportunity for disabled people to work as equal partners to develop and improve the services that support them and their families.
Professor Sally Byng, OBE
Chief Executive, Connect

Connect is a national voluntary organisation that works to promote practical, creative and lasting ways of living with communication disability after stroke.
Sally was formerly head of the Department of Language & Communication Science at City University and professor of communication disability there. She is a speech and language therapist by background and has been in research for most of her career.
Her research has focussed on developing, describing and evaluating therapies for people with communication difficulties after stroke, as well as into understanding the experience of living with communication disability. She has published widely on these topics, including publications for people designed for people living with communication disabilities.
Professor M Anne Chamberlain OBE
Emeritus Professor of Rehabilitation Medicine

Anne is a professor of Rehabilitation Medicine who has worked in Leeds for 30 years. She founded the Rehabilitation Medicine services there. Over time they have expanded greatly and now include not only acute rehabilitation, post- acute inpatient rehabilitation but also specialist community services such as the Young Adult Team and the Head Injury Team. This expansion has been achieved with clinical colleagues and they, and academic colleagues in the Rehabilitation Research Department, have evaluated most of these developments.
She has lead 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 has worked in Higher Education funding, but retired from paid employment four years ago owing to the debilitating effects of multiple sclerosis, which she has had for about eighteen years. She now works as a volunteer adviser for the Citizens Advice Bureau in North Somerset, where she has had the opportunity to observe the effects of disability across a range of issues, particularly financial ones.
She is pleased to be on the LTNC Advisory Group, as her experience of services is that they have been fragmented and sometimes inaccessible. She welcomes the proposition that the focus of future provision should be on individual patients and service users, through more personalised care; and that greater attention should be given to the whole of health and well being, not just the illness.
She lives in North Somerset with her husband and two teenage children.

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Barrie Fiedler
Social Care Consultant

Barrie undertakes policy analysis, service evaluation, research and writing mainly on the needs of and services for disabled people.
Her work as an independent consultant for the Department of Health includes the production of national minimum care standards for younger adults, good practice guidance on services for people with complex multiple disabilities, and reports on direct payments and independent living. Barrie is currently producing practice guidance on adult placement services for the Social Care Institute for Excellence, building on a study of person centred approaches in adult placement.
Barrie has a particular interest in quality assessment and quality outcomes for disabled service users.
Conrad Hodgkinson
Carer

Conrad lives in Sheffield with his partner, Christine Barton. Christine is a wheelchair user. In addition to his role as a carer, Conrad works as a freelance journalist (specialising in disability issues) and runs the Accessible Property Register www.accessible-property.org.uk, 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
Carer

John is 55 and a carer, looking 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 is actively involved in a broad range of activities that will lead to improvements in health and social care provision. John was previously a quality assurance consultant and Trade Association Chairman.
He is particularly keen that research identifies ways of providing services needed by neurology patients that will make it easy for providers to understand the best way to do things and the reasons why .
Beverley Hopcutt
Speech & Language Therapist specialising in progressive neurological conditions and critical care

Beverley was seconded to the Department of Health as Clinical Advisor on the National Service Framework for Long Term Neurological Conditions
In her NHS role she is a manager of Speech and Language Therapy Services, comprising a multidisciplinary Neuro-outreach team and Allied Health Professionals working in the Intermediate Neuro-rehabilitation Unit at Manchester Royal Infirmary.
Her research interests and experience include:
Progressive aphasia, outcome measures, hyper-salivation and efficacy of speech therapy in Parkinson’s Disease.
Jeff Jerome,
Director of Social Services and Housing – London Borough of Richmond upon Thames

Jeff is currently Director of Social Services and Housing at London Borough of Richmond Upon Thames. After starting his working life in the NHS with stroke patients he has worked in local Government for the past thirty years in the field of social services and housing. He has worked for the City of Manchester and subsequently six London boroughs.
Jeff has a keen interest in health and social care integration, particularly around care of people with long-term and progressive conditions, and has been a member of the External Reference Group for the NSF for long-term neurological conditions. He is the joint Chair of the Association of Directors of Social Services Disabilities Committee.
On a personal note, Jeff’s sister died in 2001 after a long illness with Multiple Sclerosis, and he was involved with her care, including managing her direct payments for community based health and social care during the final 3 years of her life .

Julia Johnson
Speech and Language Therapist

Julia is attending this group on behalf of the Royal College of Speech and Language Therapists (RCSLT) as part of her duties as a regional clinical adviser for adult neuro-degenerative disorders.
Julia qualified in 1980 from the Central School of Speech and Drama in London and completed her MSc in 1986 at City University. She has worked for the past 24 years with adult patients specialising in the management of acquired neurological disorders of speech, language and swallowing.
Since 1995 Julia has been working at King’s College Hospital Regional Neurosciences Centre as Head of the neurology SLT service. Her research interest has been in the treatment of patients with MND, Parkinson’s Disease and Huntington’s Disease .

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Paul Kyprianou
Director, Icarus Icon Ltd

Paul was formally manager of Liverpool City Council’s Community Development Unit and Community Care Development Manager for its Social Services Department. He is a qualified social worker and has worked as a researcher and post-graduate tutor for Liverpool University and has extensive experience of evaluation and research.
Paul has undertaken a number of major research projects and programme evaluations, these include:
Research into the health needs of BME communities in Liverpool
The use of neurological services by BME communities
Paul has developed and delivered training for the DTLR, Wales CVS and NIF, including training on participative evaluation, community research, community engagement and working with ‘hard to reach’ groups.
Dr Andrew Nocon
Senior Research Officer, Disability Rights Commission

Andrew has carried out research into health and social services for over 20 years. His research focus is on the barriers that prevent disabled people's full inclusion in society.
Since 2003, Andrew has been responsible for research commissioning and management in the Disability Rights Commission (DRC) in relation to employment, health and independent living. Most recently, he has managed the research components of a major DRC investigation into the health inequalities experienced by people with mental health problems or learning disabilities .

Sandra Paget
Service User

Sandra has had a rare neurological condition since early childhood. She began her working life as a medical secretary at Guy’s Hospital, London where she also worked as a volunteer with the Newcomen Centre’s Toy Library for physically and/or sensory impaired children. She has a degree in psychology and M.Sc. in Science and has lived and worked in various places in the UK and in Geneva.
Since 2000 she has been involved, as a volunteer, with two regional neurological alliances; the West Berkshire Neurological Alliance, where she served two terms with their Executive Committee and the Buckinghamshire Neurological Alliance which she initiated and is now its Secretary/Coordinator. In 2004-2005 she was the elected to the Executive Committee of The Neurological Alliance as the representative for Regional Neurological Alliances.
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 Long Term Conditions. She is also interested in the public understanding and communication of science which she considers to be an important aspect of any research undertaking.

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Richard Parnell, MSc FRSM
Scope

Richard is Head of Research at Scope, the national disability organisation with a focus on cerebral palsy. He has an academic background in social science and has worked in the area of social research for many years. His works at Scope covers the areas of health and social care as well as including medical and disability issues.
Richard is also trustee of Signature, an organisation the delivers care and support services to vulnerable groups.

Dr Kate Radford
Occupational Therapist

Kate is Honorary Research Fellow (Occupational Therapist) at the Ageing and Disability Research Unit, University of Nottingham. Her main interest in recent years has been in developing and validating tests to determine driving fitness for people with acquired neurological disabilities.
Other research experience includes that of trial therapist on the multi-centre trial of Occupational therapy and leisure, research into driving fitness in people with dementia and normal older controls and research into transport options and for people who are no longer able to drive.
Kate combines part time research with clinical work as a neurology Occupational Therapist.

Professor Cath Sackley
Physiotherapist

Cath holds the Chair of Physiotherapy Research at the University of Birmingham’s School of Health Science. Her research work arose from her clinical experience and is focused on community rehabilitation. It includes a large randomised trial of physiotherapy and occupational therapy in a care-home setting and pilot work examining continence care. The group’s research also studies recovery after stroke and laboratory based work looking at new ways to enhance recovery.
Cath became a physiotherapist in 1982, completed her PhD 1991 and since then has held two postdoctoral awards. During her time at the Department of Primary Care at the University of Oxford, she was the first physiotherapist to win the prestigious five-year National Primary Care Career Scientist award.

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Maria Strudwick,
Department of Work and Pensions

Maria has worked as a researcher in Government for 7 years. She previously worked on a research project with Mind in Sheffield.
Her work involves commissioning research companies to undertake evaluations of Government policy including programmes to help disabled people such as Supported Employment (now Workstep) and the New Deal for Disabled People. Recent work includes the evaluation of the Pathways to Work (sometimes called the IB Reforms pilots).

Professor Alan Thompson
Consultant Neurologist

Alan is Professor of Clinical Neurology and Neuro-rehabilitation at the Institute of Neurology, University College London and Clinical Director of Neurosciences and Director of Research and Development at the National Hospital for Neurology and Neurosurgery, University College London Hospitals. He is also the National Medical Advisor to the Multiple Sclerosis Society in the UK and Vice Chairman of the Multiple Sclerosis International Federation Medical Advisory Board.
His research interests include the investigation of mechanisms that underlie disability in neurological conditions, particularly multiple sclerosis, the development of outcome measures which assess the impact of such conditions and the improvement of symptomatic management and service delivery in MS. He has published extensively in each of these areas.

Roy Webb
Roy Webb is the Head of Policy at the National Centre for Independent Living (NCIL), the national organisation of disabled people which supports a national network of direct payments support services and other organisations working to support independent living for disabled people. NCIL aims to improve disabled peoples rights by working with Government officials and Ministers, to influence new legislation and review existing policy and practice. Roy has worked in the disabled people’s movement for many years, and has wide experience in the voluntary sector and in the trade union and Labour movement. His role in NCIL is to help support and develop organisations and structures which will enable disabled people to live more independently in the community.

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Patience Wilson
The Department of Health

Patience is the Programme Head for the Long-term Conditions National Service Framework within the Department of Health’s Care Services Directorate. Patience joined the civil service in 1984, and for most of her career she has worked in the Department of Health, though she has also spent 2 years leading the consumer safety programme at the Department for Trade and Industry.
In a varied career, she has held policy responsibility for a range of high profile areas including cancer services, palliative care, women’s health, social care for older people, and health promotion.

 

 
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