Steering Group and Partners
The Steering Group is comprised of both health and social care professionals, patients and carers. Its role is to guide the Priority Setting Partnership (PSP). A James Lind Alliance Advisor helps the Steering Group through this, chairing meetings and providing assistance. The Living With and Beyond Cancer PSP is being led by the National Cancer Research Institute (NCRI).
Steering Group members
Adrienne is a PhD medical research scientist, diagnosed with breast cancer in 2005 and secondary breast cancer in 2010. She is involved with Breast Cancer Now’s Cell and Tissue Bank and part of the Barts Cell Research Team, as well as being a lay member of several Clinical Trial Management Groups. Adrienne works closely with the NCRI and started a Symptom Management Clinical Trials Subgroup which she has chaired for 3 years. She is a founder member of ICPV.
Dr Angela McCullagh is an independent cancer patient and carer contributor.
Dr Anne Johnson Macmillan Consultant Clinical Psychologist at Velindre Cancer Centre, Cardiff has over 20 years’ experience in working with people coping with the impact of a health condition and for the last 12 years has specialised in providing psychological support and services to children and adults with a diagnosis of cancer.
Ceinwen is Director of Partnerships & Evaluation at Shine Cancer Support, the only UK charity focused on supporting adults in their 20s, 30s and 40s who have experienced a cancer diagnosis. Ceinwen has extensive experience in the charity sector both in the UK and internationally. Ceinwen was diagnosed with Stage IV non-Hodgkin lymphoma six weeks after her daughter was born prematurely and became active as a patient advocate seeking to improve the experience of cancer treatment for young adults.
Professor Diana Greenfield is Consultant Nurse in Late Effects at Sheffield Teaching Hospitals NHS Foundation Trust and Honorary Professor in Cancer Survivorship, Department of Oncology, University of Sheffield.
Dr Graeme Michael Crawford ( MB, BCh, BAO) graduated from The Queen’s University of Belfast 1982, and gained a Diploma in Child Health, Diploma in Obstetrics and Gynaecology & Member of the Royal College of GPs. He has been a Principal in General Practice since July 1989. Dr Crawford gain a Diploma in Palliative Medicine in 2002, and has worked 2 sessions per week as a Macmillan GP Facilitator for the SouthEastern HSC Trust since 2006.
Jacqui Gath has joinged the Sheffield and Humberside Ethics Committee, sit on trial steering committees, is a lay member of the Cancer Clinical Trials Executive and Experimental Cancer Medicines Committee and support the work of local researchers in particular. She has many other commitments in the field of patient advocacy including palliative care research
Professor Andreyev qualified in Medicine in 1987 and completed a PhD in molecular biology in 1997. Since his appointment as a consultant gastroenterologist, he has specialized in treating bowel side effects of all forms of cancer treatments. His research has redefined the scale of the problem and the way these patients are best managed.
Jane Lyons is CEO of Cancer52, an alliance of nearly 100 largely small patient support group charities working in the field of rare and less common cancer. She has worked for Cancer52 for the past six years and before that was CEO of the women’s gynaecological cancer charity The Eve Appeal. Jane’s earlier years were spent in the communications field. She has been a director of top ten consultancies, run her own for more than a decade, and worked at a senior level in house. www.cancer52.org.uk.
Jonathan trained as a classical musician before pursueing a career in education, including teaching basic literacy and numeracy skills for the Criminal Justice System. He returned to postgraduate study at Leeds University in 2009 and has recently been awarded his Doctorate in music. Jonathan has worked on a variety of interdisciplinary committees in educational and medical forums, LGBT assemblies, and probationary welfare and basic education working groups for high category prisoners on release. As a member of the Leeds Medical School Patient/Carers Community he discusses caring issues with students, and is currently working with Kirkwood Hospice in Huddersfield to establish support for LGBT people.
Julia has been the NCRI consumer member of the Gynaecological clinical studies group since July 2017. Her personal experience of living with and beyond cancer is both as a cancer patient and carer. She joined the steering group in April 2018.
Karen is a specialist in cancer rehabilitation and has held clinical, academic, research and strategy posts. Karen is currently Macmillan Rehabilitation Clinical Lead for the Transforming Cancer Services Team in London, where she supports commissioners to make decisions about cancer rehabilitation. In previous posts Karen has been Regional Lead for Rehabilitation for NHS England in London and Consultant Physiotherapist for Cancer services at Barts Hospital.
Dr Laura Cove-Smith gained her medical degree at Sheffield University before moving to Manchester to pursue a career in Medical Oncology at the Christie NHS Foundation Trust. She developed an interest in living a with and beyond cancer during her speciality registrar training and gained a PHD exploring circulating and imaging biomarkers of cardiotoxicity in cancer survivors at the University of Manchester. She is currently completing her registrar training and is an Consultant in early lung cancer at the University Hospital of South Manchester/Christie NHS Foundation Trust.
Lindsey is the Chief Executive of Sarcoma UK, the bone and soft tissue cancer charity. She brings professional and personal experience of sarcoma & the rarer cancer world to this steering group. Lindsey has 25 years experience working in the voluntary health sector including roles at Prostate Cancer UK & Asthma UK.
Dr Natalie Doyle is Nurse Consultant for Living With and Beyond Cancer at the Royal Marsden in London. Natalie leads on person-centred initiatives and is dedicated to implementing the Recovery Package both within the Royal Marsden and nationally. She chairs RM Partners Living With and Beyond Cancer Pathway Group and as a Past President of United Kingdom Oncology Nursing Society she currently chairs the Cancer Nursing Partnership. Natalie has co-authored several book chapters and has published in, and reviewed for, a number of peer-reviewed journals. She is research active and regularly presents both nationally and internationally on the concepts of person-centred care, living with and beyond cancer and the practical implementation of services.
Nic is the Research Lead at Macmillan Cancer Support responsible for grant-funded and commissioned research. Macmillan has a research portfolio exploring the numbers, needs and experiences of people with cancer to build a robust evidence base, inform decision-making and strategy, and to improve the lives of people living with cancer.
As Head of Macmillan’s Evidence department, Rebecca leads the development of Macmillan’s cancer population research, insight and data activities, ensuring that we are an evidence-based organisation. She drives strategic research investment in close partnership with services colleagues across Macmillan, oversees the range of evidence functions within the department, and leads communication and use of evidence and insight on the growing cancer population in Macmillan’s health services partnerships across the UK.
Prior to joining Macmillan, Rebecca worked in research consulting and academia. This covered a wide range of expertise, sectors and methodologies including strategic foresight, trends and futures, commercial ethnography, customer insight and public health research.
Rebecca holds a PhD in cultural anthropology (University of Virginia). Her original research focused on post-socialist systems of family and social care in Eastern Europe.
Richard is a Consultant Clinical Oncologist at the Sussex Cancer Centre in Brighton, where he treats patients with Head and Neck and Breast Cancers. He is the Chair of the Expert Reference Group for the Older Person with Cancer and is Consultant Medical Adviser for Macmillan. He sits on the NCRI Psychological Oncology and Survivorship CSG. He tweets at @BreastDocUK
Richard was the patient representative on the Independent Cancer Taskforce and is the Chair of the NCRI Consumer Forum. Richard was diagnosed with two cancers, treated successful (thus far) for both, but had several treatment-related co-morbidities, and identifies strongly with fellow patients who have a fear of recurrence.
Sabine is Head of Research at Marie Curie and oversees Marie Curie’s portfolio of research activities from the identification of research priorities to disseminating results. She is part of the charity’s leadership team and has a particular interest in service user involvement in research as well as ensuring that results from charity-funded research activities are widely distributed and accessible to patients, carers and clinicians. As part of her work at Marie Curie, she initiated and oversaw the Palliative and end of life care Priority Setting Partnership with the James Lind Alliance.
Susan is a Consultant Colorectal Surgeon at the Royal Alexandra Hospital Paisley and Honorary Clinical Associate Professor, University of Glasgow. Having qualified from Glasgow University in 2000, Susan achieved her PhD in 2007, completed an Ethicon Endosurgery Laparoscopic Fellowship (Newcastle) in 2012 and finished her HST in 2013. She was awarded the ACPGBI and ASCRS Travelling Fellowship in 2014. Susan’s currently holds a NHS Research Scotland Senior Fellowship that allows her to pursue her research interests: prehabilitation, peri-operative care, technology integration into surgery and optimising staging in rectal cancer. She is currently a CSO, BDRF and CRUK grant holder and on the NCRI Colorectal CSG.
- Dr Patricia Ellis – Chair and Adviser of the PSP, James Lind Alliance
- Dr Feng Li – PSP Co-lead, NCRI
- Dr Ian Lewis – PSP Co-lead, NCRI
The PSP is funded by underspend from the NCRI Lung Cancer SuPaC Initiative, cofounded by Macmillan Cancer Support, Department of Health (DH), Medical Research Council (MRC), Economic and Social Research Council (ESRC), Chief Scientist Office (CSO) and HSC Public Health Agency Research & Development Division (Northern Ireland).
Many other organisations supporting the Living With and Beyond Cancer PSP are not listed here.