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Steering group for the PSP in coeliac disease

PSP SG

Membership of the steering group includes patients, parent/carers and clinicians with direct, relevant experience of coeliac disease. The steering group is responsible for overseeing and guiding the activity of the priority setting partnership; raising awareness of the PSP, assisting with the checking and collating of uncertainties, participating in the final workshop and taking the research priorities to funders.

Our research manager, Dr Heidi Urwin is the PSP lead, Professor David Sanders the PSP Clinical Lead and Katie Stokes the PSP Co-ordinator.

Members of the Steering Group

Maryrose Tarpey

Maryrose is our James Lind Alliance (JLA) adviser for the Priority Setting Partnership and Chair of the Steering Group. Until February 2016 she was assistant director at INVOLVE Coordinating Centre, part of the National Institute for Health Research, where she led on policy and evidence on public involvement in health and social care research. Through INVOLVE, which was a JLA founding partner, Maryrose has supported the JLA approach since the foundation of the James Lind Alliance in 2004. She joined the JLA team as an adviser in April 2016.

Ann Daly

Ann Daly is an Information Specialist. Ann has worked on a number of PSPs managing the data; this primarily involves formatting, classifying and collating submissions. She has a BA Honours degree in Information Studies and an MSc in Evidence-based Medicine and Practice.

Manpreet Bains

Manpreet was diagnosed with coeliac disease in 2006 after two years of suffering with IBS like symptoms and having lost a significant amount of weight. Manpreet is a lecturer at the University of Nottingham and has worked on a variety of health related research projects. She also teaches on the Masters in Public Health programmes offered at Nottingham. Manpreet is a patient representative on the Steering Group.

Brian Barnes

Brian has been diagnosed with coeliac disease for over 20 years. He was persuaded by his wife and friend to become the Coeliac UK Buckinghamshire local group organiser when there was a threat that the group would close. He retired from the Commonwealth War Graves Commission in 1997. He has been a local Church Warden for 37 years, until last year he was on the Board of the local YMCA and he is captain of an offshore sailing club. Brian brings a broad patient perspective from personal experience and from those he meets through his role as Group Organiser.

Andrea Gibbons

Andrea is originally from Ireland but moved to the UK in 2013. In 2011, whilst completing her PhD in psychology, she was diagnosed with coeliac disease. Since then Andrea has worked as a researcher on various health related projects. She lives in Surrey with her partner, who also has coeliac disease.

Debbie Lane

Debbie has a background in pharmaceutical research. She is now a stay at home mother, whose son has been diagnosed with coeliac disease. Her husband and father are also diagnosed, making three generations of her family affected by the condition. Debbie brings a parent/carer perspective to the Steering Group.

Professor David Sanders

Professor David Sanders is a professor of gastroenterology and a consultant gastroenterologist at the Royal Hallamshire Hospital & the University of Sheffield. He is internationally recognised for his work in coeliac disease, gastrostomy feeding and small bowel endoscopy. He is the current Chair of the Coeliac UK Health Advisory Council, BSG Council Member and President of the International Society for the Study of Celiac Disease. Professor Sanders is the clinical lead for the priority setting partnership.

Dr Debbie Bell

After receiving her medical qualifications in 2000 from the Royal Free Hospital in London, Dr Bell moved to Norfolk where she specialised in dementia and mental health. She subsequently moved to St Albans where she has practiced as a GP since 2007. Dr Bell’s youngest daughter is diagnosed with coeliac disease, giving her both a healthcare professional and parent/carer insight.

Dr David Bellamy

Dr Bellamy joins us as a practicing GP. He started out in the Royal Army Medical Corps before qualifying to become a GP in 1997. He is currently a partner at a surgery in Rotherham. Dr Bellamy has been diagnosed with coeliac disease as has his daughter.

Abi Freedman

Abi works as a specialist paediatric gastroenterology dietitian at the Royal Free London NHS Hospital. She has over 10 years’ experience of working with children who have coeliac disease, inflammatory bowel disease (IBD) and other gastrointestinal problems. Her special interests include dietetic led clinics for management of coeliac disease, food reintroduction after liquid diets in IBD, and multiple food exclusion diets in allergy.

Dr Peter Gillett

Dr Gillett is a consultant paediatric gastroenterologist at the Royal Hospital for Sick Children, Edinburgh. He established the SE Scotland regional coeliac service in 2001 and is a member of Coeliac UK’s Health Advisory Council. He has been a member of the Scottish Government Group developing the Gluten Free Food Service, advising on medical issues and a member of the NICE Coeliac Quality Standard Development Group.

Professor Marios Hadjivassiliou

Professor Marios Hadjivassiliou is a consultant neurologist with a special interest in the neurological manifestations of gluten related diseases. He is the director of the Sheffield Ataxia Centre, accredited by Ataxia UK as an Ataxia Centre of Excellence, one of only three in the UK, and is a founding member of the Sheffield Institute of Gluten Related Diseases (SIGReD). He is a member of the Health Advisory Council for Coeliac UK and Medical Advisory Board for Ataxia UK.

Veronica Mitchell

After moving to the UK from New Zealand in 1990, Ms Mitchell worked in the banking industry in asset management for 10 years. She then moved into dietetics, qualifying in 2010, and started work for Hounslow and Richmond Community Healthcare NHS Trust, where she is now the lead gastroenterology dietitian. Ms Mitchell’s interest in coeliac disease stems from a project she undertook in her postgraduate work and she is now enjoying the freedom as lead gastro to develop the service and improve outcomes for patients with the condition.

Katherine Page

Mrs Page qualified as a dietitian in 1985 in Cardiff. She now practices at the University Hospital of North Midlands NHS Trust, Stoke on Trent, working in upper and lower gastrointestinal surgical wards and surgical special care. She also works in an outpatient clinic for consultant referral gastro patients, mainly with coeliac disease and irritable bowel syndrome. Mrs Page was herself diagnosed with coeliac disease in 2011 so offers views from both a healthcare professional and patient perspective.

Dr Gerry Robins

Dr Gerry Robins moved to Yorkshire to specialise in gastroenterology in 1998. He is a consultant gastroenterologist at the York Hospital NHS Foundation Trust, and leads the coeliac disease service at the Trust. He has worked as a lecturer in medicine at the University of Leeds, undertaking further research into the links between obesity and colorectal cancer, and the nutritional aspects of coeliac disease and the gluten free diet. Dr Robins is a member of Coeliac UK’s Health Advisory Council.

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