Centre Executive Committee (CEC) Patient and Public Involvement and Engagement (PPIE) Representative and Co-Investigator
Telephone:+44 (0)20 7815 8388 c/o Susie Sykes
School/Division:Health and Social Care / Allied Health Sciences
Helen came into PHIRST London CEC in the role of PPIE representative and Co-investigator having been a member of LSBU People’s Academy Patient Public information Group. Main focus of CEC role is to ensure patient public voice is considered in all Centre level decision making and that PPIE representation is embedded across the Centre infrastructure. This includes providing advice to PHIRST London on the development, implementation and review of its PPIE strategy and contributing advice if required establishing project PPIE panels.
A former nurse of 42 years with specialist area in community health, like many who become PPI members, it is as a result of personal incidents which drives her to want to make a difference and get involved in opportunities. Helen brings a ‘Library of Lived Experiences’ to draw from as a person with a defined disability being deaf since child, a patient and carer. Helen provides a different dimension in raising deaf awareness and use of assistive communication alongside improved pathways and equity, towards expanding diversity to be fully inclusive and accessible for all disabilities.
Helen’s diverse experiences bring fresh perspectives. One example includes pioneering HIV/AIDS integrated projects when working in Australia end of 80’s into 90s within health and social care. One of main focuses was on peer led voluntary sector and reverse mentoring was part of enabling voices of those infected and affected to lead in developing processes for self-determination in personalised community care.
She has presented and contributed to various PPI events, projects, research and to LSBU Health and Social Care students. She has a particular interest in co-partnership or co-productive working and inclusive accessible digital health. Most current background is as PPIE member with Kings College Hospital accessibility working group and contributed to their renewed Accessible Information Standards (AIS) Policy and PPIE member with Kings Improvement Science.
Provides Lived Experience teaching sessions to health and social care students. This has been mainly but not exclusively with OT and Social Worker students. Helen has provided sessions on deaf awareness, care of deaf patients in hospital, end of life care, care of parent with Alzheimer’s, art and recovery, personalisation and co-production.
Most recent research projects contributing from a PPI representative perspective within LSBU have been with a rehabilitation post-COVID project with specific focus on recovery post ICU interventions and a Dementia Friends Research capturing students learning and impact of integrating it into the curriculum for health social care students.
Although retired from nursing received Queens Nursing Award in 2015 and remains member.
User tester for advanced smart digital hearing aids and personalised communication technology. Helen contributes to ongoing development of GNResound high powered hearing aids for severe to profound deafness. She currently wears and advocates benefits of wearing EnzoQ which also enables direct audio streaming and real time live assistance via smart app and cloud technology.