Public Reference Group
Members of the public providing us with their experience of living with multiple long-term conditions.
Jenny Robertson is the PPIE coordinator for AIM-CISC as part of her role as the Advanced Care Research Centre PPIE coordinator.. Jenny previously managed the public involvement in research programme for the Multiple Sclerosis Society and developed an international public involvement group for a project focusing on patient reported outcomes in multiple sclerosis. Prior to this, she worked as a research assistant at King's College London, investigating the impact of cognitive behavioural therapy for people living with persistent physical symptoms. Jenny has a degree in Health Psychology.
Peter retired after more than forty years in managing adult social care services, and was presented by the British Association of Social Work with a Gold National Lifetime Achievement Award. He now chairs the local Healthwatch service and undertakes PPI roles in a number of projects across NE England as well as working for Teesside University recruiting potential students and as an ‘expert by experience’, talking to health and social work students. He has lived experience as a carer for various older family members.
Yvonne spent almost forty years as a Primary School teacher in Sunderland, and having lived with several long-term conditions, was keen to engage with research that investigated differences in life-expectancy, inequalities in health, and other social outcomes across the UK. In addition to holding positions as a volunteer and governor at two local primary schools, she also finds time to take part in a local liver research and support group.
Colin is actively involved as a patient representative on several UK University research projects, and is also a member of the Study Advisory Group.
Colin: “I am passionate about ensuring that every voice matters and passionate about lessening the health and social care inequalities. As a former Patient Chair of the Royal College of General Practitioners (Scotland) and a lay member in my local Health and Social Care Partnership and NHS, I ensure that my voice is heard. I represent my locality in Seniors Together and recently became a member of SOPA."
Colin is now his wfe's carer as she has developed a number of long term conditions. He hopes that his participation in this study will prove to be of benefit to the patient and carer population of the United Kingdom.
Jo qualified as a solicitor but turned to voluntary work when her children were born. She was a non executive in a number of health bodies for about 30 years culminating in 10 years as Chair of a large mental health trust where she actively supported research thanks to pressure from a daughter who works for the NIHR. For the past 8 years she has been a lay rep on the Partnership Board of the Local Clinical Research Network - North East and Cumbria.
Edith has a unique view into the challenges that long term illness can bring - she has worked in Nursing and Social Care, and dealt with chronic pain for several decades. Her aim in being a public contributor is to make life better for those similarly afflicted, and says that "If I can do something to help someone live their best life regardless of the challenges, I'll have achieved my goals."
Brian has enjoyed a long and varied career, having been a line manager in various industrial companies, a partner in an international management and technology consulting firm, and the CEO and Chair of two engineering companies. His experience with two chronic conditions, and time spent as Chair of the NHS Board for Lothian gives him a very singular insight into multimorbidity. He also chairs the Study Advisory Group.
Colin is a volunteer member of the Patient and Public Involvement Group at the Wellcome Trust Clinical Research Facility at the Western General Hospital Edinburgh/University of Edinburgh. It was through this that he became involved in the development of the AIM-CISC proposal to NIHR and now continues his involvement as part of the Public Reference Group. He has a number of lifelong chronic conditions and is a regular user of health services. Accordingly he has significant experience to contribute and a direct interest in the future design of services and management of chronic conditions. Colin works full time has a background in health policy development and NHS management.