ICPV Trustees meet face-to-face at least twice a year for formal meetings, at other times business is dealt with by email.
Minutes of ICPV Trustees Meeting18th Jan[...]
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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.
During five years 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. Her interest in Biobanking started before her cancer diagnosis and has been developed by her advocacy experience.
Maggie has worked with Breast Cancer Campaign Tissue Bank and is now a member of the executive board of the Confederation of Cancer Biobanks and the Stakeholder & Fee Group for the Human Tissue Authority (HTA)
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 Tissue Access Committee, lay member of the steering group for the UK Therapeutic Cancer Network (UKTCPN-ECMC) and until recently sat on the Breast Cancer Care Research Partnership and the London Cancer Alliance Breast Pathway Group.
Mairead is a retired information scientist 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.
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.
July 2016 Conferences
ICPV members were busy this week with two conferences. The BACR/ECMC Joint Meeting on Therapeutic Interventions for Cancer Prevention was held in Bristol July18-19. The UK Breast Cancer Research Symposium was held in London from July 22-23. Click here for more information.
UK Therapeutic Cancer Prevention Network (UKTCPN)
An update from this new group was presented to the ECMC Annual Network Meeting in May 2016. Click here to download and read.
The ICPV Science for Advocates Course will be hosted by Warwick CTU from 19th - 23rd September. See the VOICE pages for more information.
The Voice, Winter 2015-2016
The latest ICPV newsletter is now available. It has reviews of members activities, meeting attended and papers published. Go to the ICPV Publications page to download.
Call for immediate change to European Paediatric Medicine Regulation to save more lives of children and teens with cancer.
A few basic changes to European Law could speed up access to newer, kinder and potentially better drugs for more children and teenagers with cancer. Click to Sign the petition
Two years on from the start pioneering TRACERx lung cancer study. Click here For the latest news and patient views on this study.
NCRI Conference 2015, Liverpool
ICPV members will be joining cancer researchers from 1-4 Nov, 2015. Click here for more information.
ICPV Summer School 2015
Qualitative Research Training Course at Warwick. Click here for a review of the session.
NCIN, Belfast, June 2015
Several ICPV members attended and spoke at this years conference. Click here for more.
AACR Conference, Philadelphia, April 2015
ICPV Member Pat Fairbrother joined US advocates at this year's conference. Read her review of the event here.
Cancer Drugs Fund
Today (19 Jan 2015) The Telegraph has published a letter from ICPV & fourteen other charities on the current CDF situation. Go to our Facebook or Twitter page for Telelgraph weblink or click below for the letter.