The ACPGBI has an active Patient Liaison Group (PLG) who provide a patient and public voice to the Association. They help us deliver a professional service to meet the current and future needs of colorectal patients and continue to improve patient care.
The PLG represents and champions the priorities of patients and it highlights patients’ communication, information and physical and emotional support needs, so that patients can make the very best decisions about their treatment and have a good experience during their care process, as well as good clinical outcomes at the end of treatment.
The PLG can raise areas of patient concern with the Association and responds to requests to provide views, comments and written commentaries for a patient readership for use by the association, both for its own members and for an external professional and public audience. In this way, the PLG seeks to inform patients and the public about colorectal issues and their impact on patient care and the public.
Composed of eight lay people, the PLG is entirely voluntary and unpaid. Most of its members have considerable experience both as patients with colorectal disease and also in patient support groups, such as the Ileostomy & Internal Pouch Association and the Colostomy Association.
There are strict terms of reference to ensure that the group acts in the best interests of patients at all times and as independent private individuals, so that they can voice honest and critical opinions both to the association and to other external committees.
Some examples of their work:
- Attendance at ACPGBI Council meetings
- Membership of ACPGBI committees which set standards of care
- Involvement in the Annual Meeting, by organising a PLG Session
- Responding to consultations with the association, such as changes to the National Bowel Cancer Screening Programme
- Membership of the GICP Project Board and Clinical Advisory Group for the National Bowel Cancer Audit (NBOCA) and leadership of its Patient and Carer Panel
- Involvement in Patient Groups (Delphi) in prioritising research
- Patient commentary on revised guidelines, protocols and audits for colorectal conditions produced by or including the association
- Providing lay commentary which explains the benefits to patients for research funding applications, and participation in research application preparation
- Membership of the Clinical Reference Group for Specialised Colorectal Services, which advises NHS commissioners
- Preparing guidelines and other documents, by invitation to other groups
- Representation of patients at surgical meetings, for example on finding consensus on how best to manage fistulating Crohn’s disease.
- Preparation of patient leaflets
Sarah Squire (Chair)
By day, Sarah is a Research Scientist at the University of Oxford working on therapies to treat Duchenne muscular dystrophy. Her involvement in the colorectal world grew following many surgeries, including a colostomy, due to a persistent rectovaginal fistula. She wanted to help others feel less alone and more well informed on their patient journeys. With her scientific background, this evolved into more involvement in research, alongside the patient support she still believes is so important. Sarah is passionate about patients having a voice to influence future research, and wants to help ensure the needs of colorectal patients, current and future are both met and improved on.
As well as being a member of the PLG, Sarah sits on a growing number of steering committees for clinical studies, is a Patient & Public Involvement member on the Specialist Colorectal Clinical Reference Group, a Patient Representative on the Pelvic Floor Society Exec committee, a Coloplast Consumer Ambassador and a council member of the MASIC Foundation. Previously she was a Volunteer and Trustee of Colostomy UK, a Patient Advisor for the IDEAL Collaboration and a school governor.
Bob Arnott has been an Honorary Member of the ACPGBI, since 2021 and is immediate Past Chair of the Patient Liaison Group. He was awarded the prestigious Geoff Oates Medal by the ACPGBI Annual Meeting in 2022 for his outstanding contribution to ACPGBI.
Fellow of Green Templeton College, University of Oxford. Specialist in the history of medicine and disease in the ancient world. He was first diagnosed with Crohn’s Disease in 1970 at the age of 19 and in 1976, he suffered a serious relapse and subsequently came under the care at Birmingham General Hospital, where he had performed the first of many laparotomies and resections and in 1982, gave me my ileostomy. His contribution as a patient representative started eighteen years ago when I was invited to be a trustee of the Bowel Disease Research Foundation and for its last six years, He was the Secretary and was on the team that negotiated the merger with B&CR and was Foundation Secretary of Bowel Research UK.
Bob is one of the founders of the Patient Liaison Group of the ACPGBI and is immediate past Chairman. This has brought him into the mainstream of the work of the ACPGBI, sitting on its Council and External Affairs Committee and on several sub-committees and more recently, the Diversity and Equality Working Group. He is a member of the NHS Digital National GI Cancer Audit Project Board and the National Bowel Cancer Audit (NBOCA) Clinical Advisory Group and Chairman of the NBOCA Patient and Carer Panel. He is a PPI Adviser/co-applicant (and co-author) to many research projects in the field of colorectal surgery, especially IBD and bowel cancer, many published in Colorectal Disease, of which journal he is a member of the Editorial Advisory Board.
Nicola Dames is a nurse, a wife, a patient, a mother and a business women. Diagnosed in 2001 with Ulcerative Colitis, which lead to Stoma surgery in 2006. Nic joined the ACPGBI (Association of coloproctology GB& Ireland) PLG (Patient Liasion Group) 5years ago, her passion for patient involvement in research as well as patient led research resulted in becoming a published first author of a major study published in Colorectal Disease.
Dr Sarah Fitzgibbon is a GP in Cork, Ireland and is the Irish representative on the PLG. She was diagnosed with metastatic colorectal cancer in 2014 and has undergone numerous treatments and surgeries which have been very successful. She has recently become involved in patient advocacy and is keen to help her medical colleagues gain a better understanding of the patient perspective. She is also the founder of the Women in Medicine in Ireland Network, which supports and encourages female doctors and medical students in Ireland, and has hosted two successful conferences for the organisation. She writes regularly for the Medical Independent, and sporadically on her own blog.
Ian has been a patients’ representative on the East Midlands Colorectal cancer ECAG for several years and a member of the NHS cancer alliance PPV for four years. He runs two local support groups, one for bowel cancer patients and one a local ostomy support group, . Ian was first diagnosed with bowel cancer in 2011 after a long year of misdiagnoses, he had chemoradiotherapy therapy, abdominoperineal resection of rectum surgery then further chemotherapy. He has had two further operations for parastomal hernias and two more for perineal hernias. Ian’s cancer returned in 2021 in the lymph nodes in his groin resulting in an inguinal block dissection and a further round of chemotherapy.
Ian is a “people person” and through his volunteer involvements and awareness talks has contact with people and patients at all stages of their treatments. His driving aim is to improve outcomes of those with bowel cancer and anyone needing stoma surgery, which he believes will be achieved through research and shared best practices. Ian has always been a “blue-collar “ worker doing a traditional apprenticeship after leaving school and working in engineering. Although he preferred being hands on, he was forced to take an office role as engineering planner after the cancer treatments. When fit enough, Ian enjoys cycling time permitting. He is also a big fan of mindfulness as a relaxation tool and has an interest in the link between mental health and physical health.
Jenny Pipe is a member of the Patient Liaison Group and a member of the Inflammatory Bowel Disease (IBD) Committee. She is a former member of the Ileostomy & Internal Pouch Association Executive. She suffered 10 years of ulcerative colitis until undergoing a panproctocolectomy at the age of 46 to create a permanent ileostomy. The support she gained from IA has led to her realisation of how important patient-to-patient support is in the recovery from surgery and she is an IA trained visitor. In that capacity, she has been able to offer support to many patients who have undergone various surgical procedures for IBD and bowel cancer.
She took part in the ACPGBI/BDRF Delphi Patient Consultation Exercise and was privileged to be asked to join the ACPGBI Patient Liaison Group and represents the patient viewpoint on the Multidisciplinary Clinical Committee and now the IBD Committee.
For more information about the PLG, please contact email@example.com