PPIE Advisory Group at HSCWRU
This page profiles the members of the Patient and Public Involvement and Engagement Advisory Group of the Policy Research Unit in Health and Social Care Workforce (HSCWRU).
HSCWRU PPIE Strategy, 2019-2023
Chair: Valerie Lipman
Unit lead: Caroline Norrie
I have more than 20 years’ experience working or volunteering in the homelessness sector, including a focus on homeless health and social care, and a wealth of personal ‘lived experience’ of services which stretches back to being a young run-away from the institutional care system. I am passionate about engaging with often ‘easy to ignore’ groups and I have led numerous initiatives with experts by experience, which have enabled those people to directly contribute to research and messages to policy makers, and to published articles—including within The BMJ, The Lancet, and the British Journal of Healthcare Management. In 2018 I was awarded a runner-up place for Expert Citizen of the Year for Leadership and in 2019 I launched ‘Expert Focus’, where I continue to champion the voice of ‘lived experience’ at the forefront of policy and service commissioning and delivery strategies.
I have both personal and professional experience relating to my membership of the Unit. I am autistic and do a lot of work around challenging misunderstandings of autism and moving away from the deficit model of autism. I also give training on changing therapeutic practice in the field of mental health for autistic people and trying to ensure that the Autism Act 2009 is adhered to.
At time of writing, I am the Mayor of London's Public Champion for Social Prescribing. I Co-Chair the Joint Partnership Board in Haringey and Chair the Autism Reference Group.
Professionally, I have trained over 800 people in Support Brokerage, Personalisation and holistic support planning across London and the South-East. I am a strong proponent of the need for good support planning that includes all aspects of someone's life and does not just centre around impairments or disabilities. I have also worked in Direct Payments, specifically for people with a learning disability.
Follow Andrew on Twitter @NBNLondonRegion
I have been involved in the Carers Section both on a professional and personal level. In a project partnered by the local authority and the voluntary sector, I set up and ran a telephone befriending scheme in Camden for older people which ran successfully for many years and continued under new auspices after the scheme ended. This meant my being in touch with the members of the scheme who were receiving care from local authority and other agencies or being carers themselves. As well as a listening ear, the project was able to support members in other ways too, for example by referring them to local agencies who would be able to meet their various needs.
On a personal level, I have been involved over 15 years with the mental health services as an informal carer for my son following a diagnosis of a disability. In the last five years, I have been bringing up my granddaughter for whom I am also a Special Guardian. I am a member of Grandparents Plus, an organisation that supports kinship carers and have lately joined their band of ‘Someone Like Me’ volunteers who support people who have recently become Special Guardians by listening to their stories and sharing their experience as only someone in their shoes can.
As a ‘baby boomer’ and service-user, I confess to a vested interest in ensuring that future services and the workforce delivering them will enable me as I become increasingly frail to remain as independent and self-caring for as long as possible.
Since my retirement in 2007 after a forty-year career as a Psychiatric (Forensic) Social Worker, I have continued to be actively involved within the Health and Social Care field as a lay representative contributing to a range of NHS committees, working parties and ‘Task and Finish’ groups, serving as one of the London Clinical Senate’s PPVs and helping to develop Greenwich CCG’s Frailty pathway. I try to bring an ‘authenticity’ to my role both as an older, visually-impaired user (registered disabled in 1998) but also give a ‘voice’ to local grassroots user-groups that are seldom heard or overlooked.
Originally employed by the Home Office as a Research Associate, I’ve endeavoured to keep my involvement in academic research live as a research assistant on a five-year study investigating Post-Natal Depression and currently serve as a lay advisor on a number of KCL and Department of Primary Care and Population Health (UCL) research projects. I also advise large organisations on issues around inclusivity in the workplace and help raise the awareness of Age and Sensory Impairment with their public-facing staff.
My experience of being a care giver came when I looked after my mother at home as she slowly declined with dementia.
At present, I support numerous vulnerable and isolated members of my community living in my borough, by regular visits and contacts.
I bring a practical understanding of the experience and needs of carers and the cared for to the Policy Research Unit. In addition to this role, I continue to be involved with the carer and user advisory group at the NIHR School of Social Care Research and also with various research projects in the health, dementia and social care fields. My functional approach to life and my drive to seek practical solutions will, I hope, contribute in steering policy research in a more realistic and caring direction.
My background was in legal services and local government.
Valerie is a social gerontologist with over 30 years’ work experience with older people's organisations (including Pensioners Link, Age Concern London and Age Concern England). She worked as an independent management consultant and researcher focusing on older people matters, particular concerned with user involvement, ethnicity, older women and ageing in international development. She was awarded a PhD by the Centre for Ageing at the University of Southampton. Her thesis examined the relationship between the status and recognition of older people in international development. Valerie is preparing papers on this at King's and has presented on this topic internationally.
As a member of HSCWRU she has been involved in a range of projects including undertaking a review of CRB checks world-wide and shift handovers in care homes. Valerie is a member of the NIHR SSRC User, Carer and Practitioner Review Group and has been a member of several advisory groups for HSCWRU research projects. She is involved in local health campaigning.
I have worked in the voluntary sector for over 20 years, primarily with people living with dementia and their carers.
Most recently I was a specialist Knowledge Officer at Alzheimer’s Society. I trained staff across England and Wales and produced evidence based information for the public and professionals on NHS Continuing Health Care (CHC) funding, social care funding, personalisation and respite care. Sharing information with policy teams and influencers across a number of organisations, I liaised with external stakeholders, researchers and government departments.
In previous roles I have trained social care professionals, care home staff, volunteers and family carers. I’ve worked in advocacy and public and patient involvement with vulnerable groups and have developed and managed a number of services supporting people living with dementia and carers.
I have personal experience as a family carer and believe that accessing accurate, evidence-based information for decision making is crucial. For people who have no choice but to engage with an often unwieldy health and social care system an understanding of its workforce is a vital part of this puzzle. As experts by experience they must be given the opportunity to influence.
I am a member of the British Psychological Society.
Dolapo (Della) Ogunleye
A research adviser currently advising researchers Biomedical Research Centre at the Royal Marsden and Cancer Research UK in their projects. I also lend my voice as an independent trainer, facilitator, and mentor to patients and their families affected by cancer. I go abroad to Nigeria with regular updates where I am also encouraging research into better treatments. This was an article I wrote on International Women’s Day 2017.
As a patient I’m delighted to see the value of patient and public participation in research. Patients and members of the public are increasingly being seen less as just participants and more as partners in research and this can only be a good thing for everyone. I was motivated to be involved in shaping research because as a cancer survivor I have benefited from someone else's research. One of the exciting aspects of getting people affected by any disease is ensuring that a patient's voice is needed to demonstrate that Patient and People Involvement / Engagement has a meaningful impact and that whenever possible this is reflected in measurable change. I am enjoying my sessions at the gym where I promote fighting cancer with fitness. I also read a lot and am currently reading a classic by Alexander Solzhenitsyn - a book called Cancer Ward, recommended by a lady I met in the gym.
Joan worked as a social worker in children’s and mental health during much of her working life. Since obtaining her PhD in 2002 she has been active in carer and service user research. Joan was a lay member of the Mental Health Review Tribunal for many years. She is now retired.