ICPV Trustees meet face-to-face at least twice a year for formal meetings, at other times business is dealt with by email.
Maggie was a Health Visitor but for the last 10 years before early retirement, she worked as a CNS in Palliative Care – mostly as Nurse Director of a community team providing 24hr cover but also
as hospital based Macmillan Nurse.
Maggie was diagnosed with breast cancer in 1997 and treated with surgery and radiotherapy. This was followed by a mastectomy a year later due to post-radiotherapy problems and ten years of endocrine therapy. No further treatment and, so far, so good.
As a lay member of the NCRI Breast Clinical Study Group, Maggie’s involvement became more specific to cancer research and the ethical use of data and tissue Maggie was involved in the development of Breast Cancer Campaign Tissue Bank (Breast Cancer Now). Current member of the BBMRI-ERIC and the European Initiative on Breast Cancer (Biobanking And Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium).
Maggie’s interests include spending time with family and friends, going to her local David Lloyd Club and travelling. Maggie volunteers at a local arts centre and a member of the National Association of Decorative & Fine Arts Societies (NADFAS) and a wine-tasting group.
Adrienne was diagnosed with breast cancer in 2005 and secondary breast cancer in 2010.
Adrienne is a PhD medical research scientist and worked for 20 years in academia and industry. After breast cancer she worked in the cancer charity sector, spending three years as the staff scientist at Children with Leukaemia, and then a year as the secretariat for Cancer52 – an umbrella organisation that represents the less common cancers.
She worked as a patient advocate with Breakthrough and Breast Cancer Campaign following her diagnosis and now with the new merged charity Breast Cancer Now. She has been involved with Breast Cancer Now's Cell and Tissue Bank since its inception and is a valued member of the Barts Cell Research Team. She is a lay member of several Clinical Trial Management and Working Groups and a familiar independent patient voice in Q and A sessions at cancer research conferences.
Mairead was diagnosed with breast cancer in 2002. She had chemotherapy, followed by a mastectomy with immediate reconstruction, radiotherapy and endocrine therapy. Since her treatment Mairead has developed mild lymphoedema which is now under control and capsular contraction in her reconstruction which has resulted in the need for further surgery. This has prompted Mairead to feel strongly about the issues and potential problems patients face with the long term effects of cancer treatment.
Mairead has been a member of ICPV since 2009 and currently sits on a number of trial management groups. She is a member of the Breast Cancer Campaign Now Tissue Bank Access Committee, steering group for the UK Therapeutic Cancer Prevention Network, sits on the Early Disease Subgroup of the Breast Clinical Studies Group, ICR CTSU PPI Group and the ICR BRC Breast Group.
Mairead is now retired and enjoys gardening, needlework, reading, walking and travelling.
Carolyn's first diagnosis of cancer in 1999 prompted early retirement, from her work as Director of Sussex University's Career Development Unit - though in truth that was more to do with the side effects of Tamoxifen than with the cancer itself.
Her involvements in cancer were initially through the UK Breast Cancer Coalition, a patient led advocacy group, many of whose members later went on to become founder members of ICPV, and in the then Sussex Cancer Network. Increasingly involved in research, she is a Trustee of ICPV, sits on Research for Patient Benefit SE Coast Committee, leads NCRN's work on the research questions in the National Cancer Patient Experience Survey and is a member of NCRI's Psychosocial Oncology & Survivorship Clinical Studies Group. She is a member of a number of trial steering groups in Psychosocial & Palliative Care and the radiotherapy trial FASTForward. She is now on a Phase 2 trial to treat 3rd recurrence, diagnosed earlier in 2014.
A link with her earlier roles as a counsellor and careers psychologist is her work on a number of evaluations of user involvement and advocacy –interviewing & report writing for, inter alia, Macmillan Cancer Support, the UK Clinical Research Collaboration, and a user –led study looking at the personal impact on advocates of our involvement.
Following a diagnosis of breast cancer several years ago Pat became involved in patient advocacy. Working in healthcare, which included a contract as patient involvement facilitator, gave her a unique insight into the need for patients to be involved at the heart of planning services. Pat developed an interest in research after working at a regional and national level with breast cancer charities, and local cancer services. She joined ICPV as a virtual member whilst living in New Zealand where she carried on with voluntary work with national cancer organisations. Since coming back to the UK Pat has become involved in several research projects through ICPV alongside voluntary work in cancer services regionally and nationally. Pat believes research needs the patients' unique perspective and is absolutely essential in order to make the research work.
Tom’s background was in engineering and he worked overseas for many years. In 1993 at an employment medical in Jeddah, Saudi Arabia he was told he had lung cancer. He returned home to Glasgow, underwent further tests only to be told there was no treatment which would have any effect on his lung cancer and given a very short life expectancy. He took part in an early phase chemotherapy clinical trial followed by radiotherapy which had positive effects. This led him to believe that his experiences could help other patients and researchers and clinicians and for many years he has been involved in numerous organisations, groups and committees. Some of his consumer/patient involvements include the NCRI CTRad, Screening, Prevention and Early Diagnosis Advisory Group ( SPED ), Consumer Forum, and Lung CSG. CRUKCTU ( Glasgow ), ECMC, PHE Lung Site Specific CRG, and involvement with NICE as a “ patient expert “ at Technology Appraisals. He is very much involved in cancer research and is co applicant, collaborator, advisor on several clinical trials and sits on TMGs, including the UKLung Matrix Trial and TSCs. Tom was also a member of CRUK’s NAEDI Funding Committee and Early Diagnosis Funding Application Revue Committee and is a member and trustee of the charity Independent Cancer Patients’ Voice. He has also attended and been a panellist at the Precision Medicine Forum Conference and has been appointed as consumer member on NCRI’s Cellular Molecular Pathology Initiative. He has also been appointed onto the British Thoracic Oncology Group, ( BTOG ) Steering Committee.
VOICE 2020 - Science for Patient Advocates
The next VOICE Course will be run from 31 Aug to 5 Sept 2020. Click here for more information.
ICPV Brighton Summer School Aug 2019
ICPV was once again hosted by SHORE-C at the University of Sussex. Click here for more info.
San Antonio Breast Cancer Symposium, 2018
ICPV member Pat Fairbrother attended this event on an Alamo Foundation Scholarship. Click here to read her review.
Gap Analysis in Breast Surgery Published
The 2013 Breast Cancer Campaign gap analysis established breast cancer research priorities without a specific focus on surgical research or the role of surgeons on breast cancer research. This Review aims to identify opportunities and priorities for research in breast surgery to complement the 2013 gap analysis. Click here for more information
ICPV Review 2018
We have at last published a new edition of our review. This was achieved by a grant from Novartis. Click here for more information.
Award for ICPV Member
Many congratulations to ICPV member Margaret Grayson. On 21 April 2018 she received the Iris Colvin Lifetime Achievement Award for Health, presented by the Women’s Forum of Northern Ireland. This is very well deserved for her tireless work in furthering cancer research especially in Northern Ireland.
Warwick Clinical Trials
12 members of ICPV attended a residential Clinical Trials Course at the University of Warwick from 17th to 19th April 2018. The course was run by Professor Janet Dunn and covered the different types of studies undertaken; consent; trial design; statistics and bringing a drug to market. One of the highlights of the course was a visit to the West Midlands Surgical Training Centre where delegates had the privilege of seeing real body parts and having basic anatomy explained to them by the team. The delegates would like to thank Professor Janet Dunn for her outstanding enthusiasm and for her generous hospitality.
Open letter calling on Government to prioritise interests of cancer patients in Brexit negotiations
ICPV have come together with 18 other cancer charities to put our names to an open letter to Government. We want Government to prioritise seeking continued alignment with the EU drug licensing
process and Clinical Trials Regulation after Brexit. It is hoped this letter will be published in the national press in the near future.
See below to read.
2017 Summer School
The 2017 ICPV Summer School was held over two days in June at Stirling University. The theme of the event was Cancer Survivorship and Living Well Cancer. Click below for details of the course. More details.
A snapsot video of the the 2016 course is now available on YouTube VOICE2016
At the BACR/ECMC conference in July Maggie Wilcox and Mairead Mackenzie were persuaded to speak to the camera. Maggie gave a background to ICPV and our aims and objectives. While Mairead focused on her specific interests and activities. To view follow the links below.