I have spent most of my working life in higher education and now work part time for the Open University. My interest in patient and user involvement comes from my own experience as both patient and carer. I was diagnosed with rheumatoid arthritis aged 26 and antiphospholipid syndrome and osteoporosis in my 30s. Over the intervening years I developed a couple of other long term conditions for good measure! As well as my own experience I support a sibling with schizophrenia and diabetes and a daughter with a number of health conditions.
I am currently Chair of Arthritis Research UK’s Patient Insight Partner group and have worked with the charity in a voluntary capacity for 8 years bringing patient insight to various research activities including review and evaluation of funding applications and training of researchers in using PPI.
I also chair the European Patient Insight Group for APPROACH, a 5 year IMI-funded project on osteoarthritis involving 25 European partners and one USA partner – advising on clinical trial design, ethical issues and patient communication.
I am a member of a Maternal and Foetal Health Advisory group at St. Mary’s Hospital, Manchester and a Member of an Expert Advisory Group for the Taskforce on Multiple Conditions.
I am passionate about ensuring that all patient and carer voices are represented and are part of the whole research cycle from shaping research questions to ensuring findings get widely disseminated.