IBD Surgical Outcome Registry

Patient Liaison Group

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 continue 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

Committee members

Professor Robert Arnott (Chair)

Professor Robert Arnott is the Chair of the Patient Liaison Group and its 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.

Sue Blackwell

Sue Blackwell is the newest member of the Patient Liaison Group and is also a trustee of the Breakaway Foundation, the only UK wide charity for children with bladder/bowel diversions/dysfunction.

She has suffered from Ulcerative Colitis and has had a permanent ileostomy since the age of 29.  She has also had six failed parastomal hernia repairs.

Sue’s interest is in patient involvement in research, patient recorded outcome measures and parastomal hernias.  She is a member of the ENiGMA collaborative; PPI representative on the ESCP led international parastomal hernia prospective cohort study; PPI representative on the steering group developing a core outcome set for gastrointestinal recovery, a member of the steering group on a CCUK funded study developing a patient decision aid in Ulcerative Colitis and surgery; and a co-applicant on the PoPSTER study.

She was a Civil Servant for 16 years before deciding to take the plunge and move from London to Liverpool. She is now the Digital Marketing Manager for an independent Dispensing Appliance Contractor. She was formerly a trustee of IA and served on their Executive Committee for seven years as the Young IA Coordinator.

Lesley Booth

Dr Lesley Booth BA DipLib MSc PhD MBE is the Director of Research and Patient and Public Integration at Bowel Research UK.

As the Director of Research and PPI, she plays a key role in developing and delivering the new charity’s research strategy and driving the research agenda. This includes identifying research priorities, the research grant and PhD programmes, facilitating and overseeing partnerships, promoting patient and public involvement on a wide range of research activities and the dissemination of research outcomes.

She is uniquely placed to support the work of Bowel Research UK having suffered from Inflammatory Bowel Disease for some 30 years before having a permanent colostomy in 2016. Prior to joining the charity Lesley spent more than 20 years at York University where she was Director for Community Relations and Lifelong Learning. She was also the University’s Strategic Projects Lead.

She was voted one of the First Fifty People to make York great in its first fifty years anniversary celebration.

Nicola Dames

Nicola 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. Launched a ground breaking, award winning company in 2008, live on ITV this morning show. A decade on, Nicola is committed to research within Colorectal Spheres, promoting patient representation and asking the questions others wouldn’t dare to ask.  Sex, Intimacy & Relationships with a stoma, & physical activity, are my expert areas of interest.

Sarah Fitzgibbon

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, https://adventuresofasickdoctor.blogspot.com/

Ian Jackson

Ian has been a patients’ representative on the East Midlands Colorectal Cancer ECAG for a number of years. He was also a volunteer and trustee for Colostomy UK for over three years. As well as the work he did with Colostomy UK, Ian also ran two local support groups, one for bowel cancer patients and one for the ostomy support group, and he is  still very much involved with online ostomy support.

Ian was diagnosed with bowel cancer in 2011 after a long year of misdiagnoses , he had radio/chemo therapy, APR surgery then further chemotherapy. He has so far had two further operations for peristomal hernias and two more for perineal hernias.

Ian is a “people person” and through his volunteer involvements have contact with people at all stages of their treatments. His wish is to improve outcomes of those with bowel cancer or anyone facing stoma surgery. He feelsthe best way to this is 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 since then. He preferred being hands on but was forced to take an office role as engineering planner after the cancer treatments.

When fit enough, Ian enjoys cycling (spare time permitting).  He is also a big fan of mindfulness as a relaxation tool.

Jenny Pipe

Jenny Pipe is a member of the Patient Liaison Group and a member of the IBD Sub-committee. She is a former member of the IA 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 the IBD Clinical Advisory Group.

Sarah Squire

Sarah Squire is a member of the Patient Liaison Group, PPI member on the Specialist Colorectal Clinical Reference Group and a volunteer for Colostomy UK.

She had colostomy surgery in 2007 due to a persistent rectovaginal fistula. Sarah is passionate about patients having a voice to influence in a positive way future research, and ensure the needs of colorectal patients, current and future are both met and improved on.  She is involved in many areas of Colostomy UK including administering a large and active Facebook support group, attending and presenting at conferences on behalf of the charity and has recently taken on the role of joint Editor of the quarterly magazine, Tidings.

Sarah also works full time at the University of Oxford as a Research Assistant working on therapies to treat Duchenne muscular dystrophy. In her “spare” time she runs a very efficient Mum taxi for her two children.

Further information

For more information about the PLG, please contact [email protected]