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Patients

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

 

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, is a member of the External Affairs and the Equality, Diversity and Incusion Task Force. 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 over 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 undertakes research into the history of disease and medicine in the ancient world. He was for many years, a Trustee and Secretary of the Bowel Disease Research Foundation, now part of Bowel Research UK. He is also a member of the NHS Digital Gastrointestinal Cancer Audit Programme Project Board and is also a National Bowel Cancer Audit (NBOCA) Clinical Advisory Gropu Member and Chairman of the NBOCA Patient and Carer Panel.

Sue Blackwell

Sue Blackwell is 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; Patient & Public Involvement (PPI) representative on the European Society of Coloproctology 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 Ileostomy & Internal Pouch Association (IA) and served on their Executive Committee for seven years as the Young IA Coordinator.

Dr Lesley Booth MBE

Dr Lesley Booth is the Director of Research and Patient and Public Integration at Bowel Research UK. 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 twenty 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 celebrations, receiving her MBE in 2012. Lesley is also a co-applicant on numerous NIHR grants and pan-European projects. She is a member of the Advanced Cancer Coalition, NBOCA Patient and Carer Panel and supports PPI interests for numerous institutions including UCL, King’s College London, Oxford, Imperial College Health Partners and Leeds Surgical Medtech. A former school governor she is a Trustee of the ESG Foundation.

Nicola Dames

Nicola is a nurse, a wife, a patient, a mother and a businesswoman. She was diagnosed in 2001 with Ulcerative Colitis, which led to stoma surgery in 2006. She launched a groundbreaking, award winning company in 2008, live on ITV’s 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 and relationships with a stoma and physical activity, are her expert areas of interest. She recently designed and led an important study on Sex After Surgery, recently published in Colorectal Disease.

Dr 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.

Ian Jackson

Ian has been a patients’ representative on the East Midlands Colorectal Cancer ECAG for a number of years. He has been a volunteer and trustee for Colostomy UK for over three years. In addition, he he has run two local support groups, one for bowel cancer patients and one for the ostomy support group, the latter with which 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 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 is a “people person” and through his volunteer involvements has contact with people at all stages of their treatments. His driving aim is to improve outcomes of those with bowel cancer or anyone needing stoma surgery which he belives 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 after. 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.

Jenny Pipe

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.

Sarah Squire

Sarah Squire is a member of the Patient Liaison Group, Patient & Public Involvement 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 Researcher 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 info@acpgbi.org.uk

 

Resources

ACPGBI 2020 PLG session: TIME Workshop Our Mental Health

3 August 2020
ACPGBI 2020 Virtual Meeting
Presentations, Videos & Papers

The ACPGBI Patient Liaison Group discusses the effect of colorectal surgery on mental health.