Department of Cardiovascular Sciences
National PPI Group
Meet our members
NIHR Committee panel feedback on PPI from CSG2 successful programme development grant application
"The arrangements for patient and public involvement and engagement were outstanding"
BHF Patient Advisory Group feedback on PPI involvement for CSG4 successful grant application
"It goes beyond tokenistic involvement and embeds PPI meaningfully throughout trial design, recruitment and communication plans"
Chairperson
Sarah Murray is passionate about patient care and putting the patients' needs at the centre of all innovation and research. This is what motivated her to join this novel and ground-breaking initiative and she is proud to be the Chair of the British Heart Foundation/James Lind Alliance Public and Patient Initiative for the Priority Setting Partnership. She is also Chair of the NICOR Patient Representative Group, and the Lay representative on the Executive of the Society for Cardiothoracic Surgery. She is a qualified solicitor with a broad range of NED experience both at national and regional level.
Co-members
David Batchelor is a retired engineering technician, who is registered disabled following an industrial accident that left him with spinal injuries. He has had four heart attaches, End stage COPD, hypothyroidism, PAD in both legs, stage 4 CKD, brain injury and cancer. David uses what he has to help the NHS where he can. He also works with the NIHR, Cicely Saunders Institute and universities with their research as a patient participant, a PPI, and being a co-applicant on two studies.
Phil Blakelock first came to the world of PPI after engaging with the BHF following surgery to replace a bicuspid aortic valve some four years ago, being invited prior to the operation to contribute to a research programme on heart muscle make-up. This brought a realisation of the link between physics / science and technology with cardiology, and how this can be brought to bear upon challenging cardiac conditions and the welfare of the population.
Phil has spent most of his career in Defence Engineering and is passionate about all things science. Having participated in a very professionally run heart research programme, Phil wants to influence new programmes and trials so that they are executed in the same way, particularly from the patient’s perspective, on how trials are communicated, and executed.
As a patient representative Phil contributes to many other PPI initiatives, pre-funding application assessments, BMJ patient reviews etc., including the All Party Parliamentary Group on “AI in heart and circulatory diseases”, as well as the House of Lords Committee on “Beyond Digital – Planning for a hybrid world”.
Judith Bower has been a carer and lay member of a number of Clinical Study Groups over a few years. She supports family members who have experienced many cardiac interventions. As a lay member she has a great interest in research. She has an academic background in engineering, biomechanics and education and has been a dementia adviser and trainer in dementia care for 15 years. She currently works for Empowered Carers, supporting carers of people living with dementia. Her passion is to make scientific language more accessible to lay members and give carers a voice in their supporting roles.
Anjie Chappia is a Lived Experience Researcher/Patient and Public Voice Partner/Peer Leader Strategic Coproduction Group Personalised Care NHSE/Community Engagement. She is passionate about the patient voice at the start of Innovation research and policy. Anjie has over 30 years' experience with Health and Social Care in NW London and Regionally and involved with Third Sector as a Community Champion. She cares for heart patient family and friend navigating services where Language-belief-culture and faith often lead to assumptions and unsatisfactory outcomes without patients' and family voice and she is keen to share and learn how to overcome hurdles to reduce health inequalities incorporating value based approaches in research and upcoming innovation.
Anjie is involved locally in Trusts, PCNS, Local Authority and Third Sector organisations as a Patient Voice for Strategic Policy and Quality Improvements. She is also involved as a Lived Experience Researcher with various Universities and Third Sector Charities. She continues to represent the Strategic Co-production Group to take forward the work of Shared-Decision Making at Transformation Level on local and regional projects.
Jeremy Dearling has been involved in PPI for many years and welcomes the opportunity to support and contribute to this initiative. He will bring to research conversations the insights of being disabled through critical illness, being a carer, and those of having worked on the front line in the NHS.
Debbie Fitzgerald has a background in healthcare and when she became affected by cardiac problems, was keen to gather as much information as possible, particularly about cardiac surgery. Through the BHF, she learnt about the opportunity to become involved in research and how she could help the researchers by bringing a patient's perspective to their research. Working in the field of Oncology, where patients are involved in clinical trials, Debbie feels she can give both a personal and professional opinion on recruitment and involvement in clinical trials. She enjoys participating in the Clinical Study Group meetings and feels her opinions are very much valued by the researchers.
Rebecca Harmston has lived experience of heart palpitations, a faulty valve and a heart murmur, which became worse during pregnancy and menopause. These seem to be inherited as family members have the same problems. Her father passed away after a cardiac arrest in hospital. Rebecca is a neuro-diverse disabled adult living with Crohn's and arthritis and is also a carer. Rebecca has volunteered as a PPI member for 12 years and was a member of the BHF Patient Advisory Group and their Clinical Studies Committee which reviews heart related research applications.
Amy Houseman has a PhD in rare genetic disorders and is passionate about ensuring patient voices are prominent in research from co-production all the way to co-evaluation. Amy is currently based at Cardiff University as a Research and Public Engagement Officer for Timothy Syndrome Alliance (TSA). TSA are a UK-based charity who support the global patient community with rare genetic variants in the gene CACNA1C. Patients with CACNA1C-Related Disorders include Timothy Syndrome and LongQT Type 8, of which some patients present with sudden cardiac arrhythmia.
Amy is also a Public Involvement Officer for ARFID-Connect, where she organises and facilitates an advisory board of lived-experience participants.
Alan Keys has been a cardiac patient representative since 2004, including BHF, CQC hospital inspector, CCG Governing Body and NHSE committees. He is currently President, Cardiovascular Care Partnership (UK), British Cardiovascular Society Council, Clinical Standards and Finance Committees, BCIS and ESC Clinical Standards Committees, MINAP Domain Expert Group and NICOR Patient Reference Group. Having benefitted from surgical expertise and worked on performance quality he wishes to contribute a little to advances in cardiac surgery by supporting specialist research.
Christina King is Chair of the CSG2 Prehabilitation PPI group and has developed her experience in the field of PPI over a number of years. Christina and her son both live with congenital cardiac abnormalities and between them have had several open heart surgeries. As a result she is keen to support research that might improve the open heart surgery experience for patients. Christina is a retired dental surgeon so is able to draw upon medical knowledge as well as patient experience to contribute to this research project.
Ian McNaughton is retired and lives with his wife near Glasgow, where he grew up and worked most of his life. Between them, they have 4 children and 3 grandchildren. Ian was diagnosed with high blood pressure at the age of 40 and had his first heart attack at aged 48, which at the time he thought was mere indigestion. Less than a year later, he suffered a major heart attack that required resuscitation twice. He was transported from Whitehaven to James Cook Hospital by helicopter where 3 stents saved his life. He was aware of heart-related issues in his family, including his father's stroke and his mother's heart valve replacement, and this intensified his interest in heart and circulatory health.
Since retiring, Ian has redirected his energy towards heart health research and advocacy. He is an active participant in the Scottish Health Alliance group, playing a role in providing valuable patient feedback in areas such as the Scottish NHS collaborating on various research projects and was proud to be invited to the Scottish Parliament for the launch of the Scottish Cardiac Audit Programme (SCAP). He had the privilege of mentoring two graduates as they took on a competition hosted by the Austrian Ludwig Boltzmann Institute, with a focus on digital solutions for individuals facing heart-related challenges, which they won first place.
He has engaged in many opportunities that the British Heart Foundation promoted and has just completed a three-year term with the BHF as a patient member of their funding group, more recently as a patient member on the Clinical Studies Committee and took part in the initial Innovation funding PAG (now Implementation fund).
Other main Projects Ian is currently involved in:
HYPERMARKER PPI member on this project run by the European Health Network looking at tailored blood pressure medication.
ADOPT-UDMI PPI grant steering committee member on this project categorising heart attacks
Harish Mistry retired in March 2023 and enjoys walking and recently joined the Ramblers group. He has served at various positions for a well-established Asian Community Group and been assisting them in the day-to-day management of the centre and continuing to provide volunteer service at events. Not long after retiring in May 2023 he was diagnosed with 3 blocked arteries and ended up having CABG x 3 at the Glenfield Hospital. He is a member of the Take Heart Patients group at Glenfield. Harish was introduced to PPI in late 2023 starting with a project called LifeMap and then various other cardio-research PPI and National PPI groups and recently with Breast cancer research. He enjoys providing support and views from a patient's perspective and to help shape health research and guidance to provide useful and easy to understand data/documentation for patients and users from all backgrounds.
Alan Munday had heart by-pass surgery at aged 59 years in 2001. he subsequently spent a number of years visiting pre and post heart operation clinics and wards and speaking at patient and carer pre-op information meetings alongside National Health Service staff. During this time, he was privileged to support many individuals and learnt much about patient needs and perspectives. Alan has been on many Patient and Public Information Panels supporting heart research including writing and editing Patient Information Literature. He was for some years on the British Heart Foundation, Public Information Panel, reviewing literature and animations. Alan has spent nearly sixty years as a carer learning much about the country's care system and how to fight for peoples' rights. Alan's professional life was based in physics, teaching and lecturing and in teacher training and latterly running his own Radiation Protection business.
Irene Leeman is a retired dentist, mainly working with children and adults with special needs, and she taught Dental Public Health to undergrads and postgraduates. She spent 9 years as a public governor for a mental health and community services NHS Trust and is a member of the Lay Committee at the RCoA. She is passionate about patient centred healthcare and hopes to share information and contribute to improvements in cardiac care from the patient perspective. She has a personal interest in cardiac treatment and care.
Mark Lewis has lived with aortic dissections since 2012 and has been an active member of the patient support group Aortic Dissection Awareness (UK and Ireland) following emergency surgery for a type A dissection in July 2018. Over the last five years he has had a number of major and minor operations and is a strong believer in the ‘voice of the patient’ in medical interventions and contributing to National health care Standards/Policy. He is contributing to a number of research projects within Cardiovascular Surgery and also aortic dissections. He has a particular interest in patient decision support tools and the use of digital and data services. Recently he was appointed as a PPV member of the NHS England Specialist Vascular Clinical Reference Group.
Chloe Sellwood, as a scientist and NHS worker is a firm believer in a patient centred approach to health care and research. She had a cardiac arrest in February 2019 and spent six and a half weeks as an in-patient undergoing investigations and surgery. She had a positive experience and was able to ask questions and engage with clinicians throughout to better understand her situation and outlook. Sadly, this isn't always the norm, and she is keen to do everything she can to help other patients and their families have a constructive and supportive health journey. She found her return to physical health much easier than her return to work and struggled with cognitive impairment for a while. This was unexpected and she has become increasingly interested in the mental health aspects associated with cardiac events.
Amanda Threlfall is a two-time carer and current part-time carer with lived experience of dementia, stroke, sight loss and T2D. Her public contribution journey began by chance in December 2020 seeing a one-off opportunity to join a focus group on primary care and grew from there. She has a family history of heart attack and high cholesterol and, as a carer, she feels it is important to highlight the health inequities that are faced by carers and housebound patients. She volunteers as a carer rep with her local support centre and as a patient and carer partner with North Bristol NHS Trust. Amanda believes the voice of the public is an essential by bringing colour and emotion to the black and white data and to add a meaningful interpretation of the evidence.
Gil Wheeler since his diagnosis of Hypertrophic Cardiomyopathy heart condition back in 1990, Gil has been involved with patient engagement and participation roles both at local and national levels learning to both listen and speak up for the patient. Throughout his time with this involvement he has learnt and helped to educate not only other patients but clinical staff as well. He sits on several health service steering groups looking at best practices, data, research, clinical studies and funding for new ideas to supporting the Heart patient now and in the future. He has set up 3 Facebook groups Big heart Club, Patients Voice and Empowering Patients within the NHS.
Keith Wilson is a former heart patient who had the benefit of research. Keith is now working at Liverpool Heart and Chest Hospital helping patients through their experiences benefit from research.