Steering group members
Dr Peter Blair
Peter has a background in Medical Statistics and a particular interest in infant and childhood epidemiology. From his work on several major observational studies he is a recognised expert in the SIDS field and was made an honorary fellow and advisor to UNICEF (UK) in 2009. He is the vice chair of the International Society for the Study and Prevention of Perinatal and Infant Death (ISPID) and chair of the epidemiological working group. Peter also has research interests in primary care research, people with learning disabilities and clinical trials. He is a consultant methodologist for both the University of Bristol Randomised Trials Collaboration Unit and the NIHR Research Design Service.
Professor Peter Fleming
Peter Fleming is Professor of Infant Health & Developmental Physiology. In 1983, he established the Avon Infant Mortality Study and over the past 25 years he has led several large-scale epidemiological studies of factors contributing to unexpected deaths in infants and children. Professor Fleming was the lead clinician in the UK “Black to Sleep” Campaign in 1991, which led to a dramatic fall in the numbers of infants dying suddenly and unexpectedly, and has been involved as a collaborator and advisor to several similar campaigns in other countries. In 2010 Professor Fleming joined CIPOLD to help apply the techniques and knowledge derived from the studies of childhood deaths to investigate the premature deaths of people with learning disabilities.
Dr Matt Hoghton
Matt has been a general practitioner since 1990 and been involved in research for 25 years. His Practice is a level 3 NIHR research practice and is hosting over 10 concurrent research projects. He has extensive experience introducing and improving annual health checks for people with learning disabilities. Matt was the RCGP Clinical Champion in Learning Disabilities from 2009 -12. He was the lead investigator in CIPOLD and the GP representative on the South West Child Death Overview Panel (CDOP) from 2009-14. He represents the RCGP on mental capacity issues, adult safeguarding and serious case reviews, and leads the RCGP Research Ready accreditation process. He has also worked with the GMC to produce material to help all doctors with the care of people with learning disabilities. From 2012 he became medical director of RCGP CIRC and is responsible for the delivery of 15 clinical priority programmes.
Robina has 2 daughters with learning disabilities in their 30s. When they were school age, she was a founder member of her local Parent Partnership Service. She later set up and then managed a well-respected national Family Carer Support Service within an organisation providing services for people with learning disabilities. Robina was a member of the Standing Commission on Carers between 2009 and 2015. She has been a member of the National Valuing Families Forum since its formation. Through her 20+ years work in family carer support she has many connections with families across the country as well as the organisations that support them. She worked with other members of the LeDeR steering group as a member of CIPOLD’s Overview Panel and National Advisory Group and is passionate about improving health and social care services for people with learning disabilities and their families.
Anna Marriott has over 13 years’ experience of research in the field of disability, working within the NHS and academia. From 2010-2014 she worked with CIPOLD and consulted closely with the Bristol Health Trainers to ensure that the views of people with learning disabilities informed the way in which the CIPOLD team worked. In 2014 she took on the role of project manager for the Learning Disabilities Observatory, part of Public Health England. Her role includes organising and facilitating an annual programme of events around the country where data, research evidence and examples of good practice are presented. She is also responsible for working with the advisory group of self-advocates and family carers to ensure that they inform and influence the work of the Observatory.
Denise is a registered social worker with over 30 years of experience as a practitioner and manager specializing in services for children and adults with disabilities and their families. As a service manager for disabled children’s services she managed a range of social care, education and community health services. She oversaw the development of closer working arrangements and care pathways between the agencies and improvements in community based support to children with complex needs. Denise is a clinical advisor for care and treatment reviews under the Transforming Care programme and is a specialist advisor to the CQC.
Lesley is a registered learning disability (RNMH) and general nurse (RGN) with a degree in Community Nursing (BSc Hons) and a Master’s Degree in Public Health (MSc PH). She has over 35 years’ experience of working in healthcare, predominantly with people with learning disabilities. Lesley established the first role in England of public health specialist in learning disabilities, which was recognised and commended by Sir Jonathan Michael in his 2008 independent inquiry report ‘Healthcare for all’. From 2010-2013, Lesley was lead nurse and investigator for CIPOLD. Her role involved oversight, recruitment and support of a team of 10 nurses, interviewing and supporting families.