ACPGBI has a Patient Liaison Group 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 continuously to improve patient care.
About the Patient Liaison Group (PLG)
The PLG represents and champions the priorities of patients. 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 four 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. 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 ACGBI Council meetings
- Membership of ACGBI committees which set standards of care
- Involvement in the Annual Meeting.
- Responding to consultations with the association, such as changes to the National Bowel Cancer Screening Programme
- Membership of the Project Board and Clinical Advisory Board for the National Bowel Cancer Audit
- Patient Group (Delphi) involved 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
- Membership of the Irritable Bowel Disease Clinical Advisory Group
- Representation of patients at surgical meetings, for example on finding consensus on how best to manage fistulating Crohn’s disease.
- Preparation of patient leaflets
2016 Annual Report of the PLG (256kB)
Jo Church (Chair)
Previously Vice-Chair of the Patient Liaison Group at the Royal College of Surgeons of England, Jo was the sole patient representative at the ACPGBI from 2008 until the formation of the Patient Liaison Group in 2015.
As a long term carer, she has come to appreciate the importance of constructive dialogue between patients and their surgeons and the clinical team. Those with devastating and limiting diagnoses often remember vividly for the rest of their lives the pertinent and well chosen words of clinicians, which can play a huge part in optimising outcomes and future self-management. Good communications can also mitigate the impact and consequences for the close family of the patient, particularly when a parent is seriously ill.
A patient liaison group in the pursuit of benefit to patients and their supporters, which ensures that it provides an independent, honest and critical view to a wide audience at all times, can offer a fresh view from those immersed in a healthcare environment, where resources and time are often in short supply.
Professor Robert Arnott is a member of the Patient Liaison Group and its deputy representative on the Council of the ACPGBI. He has suffered from Crohn’s Disease since his teenage years in the 1960s and from that time onwards has undergone surgery twelve times.
He has had an ileostomy for nearly forty years. He is a keen and experienced advocate of the rights and responsibilities of patients and is passionate about defending the NHS. A former senior manager in the NHS, he is now at the University of Oxford, where he teaches, mainly to medical students, the history of medicine and healthcare policy and researches into the history of disease. He is a trustee and Secretary of the Bowel Disease Research Foundation (BDRF) of the ACPGBI.
Azmina Verjee is a member of the Patient Liaison Group and a trustee of the BDRF.
She has had Crohn’s disease since her childhood years, subsequently undergoing various surgical procedures including an ileostomy at the age of 22 followed by a panproctocolectomy at the age of 25 for high grade dysplasia. Her personal experience has led to her to become a staunch advocate of early surgical intervention.
Azmina works within the NHS as a cancer clinical researcher and has a special interest in patient-clinician partnerships in the co-creation of research. She has both chaired and participated in various Public and Patient Involvement Panels (PPIPs) for many research studies, most notably those led by Professor Christine Norton’s research group. Azmina is a trustee of Crohn’s & Colitis UK and has represented the charity in the development of the national IBD standards, the national IBD audit and on NICE guideline development committees.
As an ad-hoc patient representative for the British Society of Gastroenterology, she recently participated in the James Lind Alliance Priority Setting Partnership for IBD. She also recently chaired the multi-disciplinary Delphi Patient Consultation Exercise on behalf of the BDRF.
Jenny Pipe is a member of the Patient Liaison Group and an elected representative on the Executive Committee of IA, the Ileostomy and Internal Pouch Support Group.
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 the IBD Clinical Advisory Group.
For more information about the PLG, please contact firstname.lastname@example.org