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 11 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
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.
Caroline Bramwell
Caroline has had a permanent ileostomy for 15 years, a decision made as a result of Ulcerative Colitis. She was diagnosed with UC whilst pregnant with her second child and made the decision to have surgery to regain quality of life to enjoy with her young family when they were aged just 6 and 4 (now aged 21 and 19).
Caroline’s story ‘Loo Rolls to Lycra: The Ironman Dreams of an IBD Sufferer’ was published in 2018 after she turned to sport following surgery, from being a self-confessed couch potato. She now competes in triathlons of all distances, as well as taking on 24 hour cycle events and is now taking on new adventures, to demonstrate that life with a bag can be a good life of new opportunities.
Caroline is a huge advocate for encouraging those facing surgery to get back to an active life without fear of exercise or food.
She is one of the women in ‘Fearless: Adventures with Extraordinary Women’ by former BBC Breakfast presenter, Louise Minchin, and is the Ostomy Expert for TV presenter, Gregg Wallace.
When she’s not wearing Lycra, Caroline is a PR & Marketing consultant and Business Mentor.
Lauraine Clarke
Lauraine is 63 and lives in rural West Wales. She has had an ileostomy for almost 40 years after developing Chrons Colitis a few months after her only daughter was born. Her husband was in the Royal Navy at the time, and they lived in Plymouth before returning to Wales where she had her surgery, after which, her bowel health was restored. She then developed severe endometriosis, so countless more surgeries followed but despite this she enjoyed an active life and worked for 25 years in Local Government.
Nine years ago, just after retiring from her job, she encountered life changing surgical complications following a hysterectomy resulting in an enterocutaneous fistula. Both the fistula and the problems brought on by it continue to be a daily challenge both physically and mentally, but she is striving to live her best life, despite everything. She enjoys nothing more than being with her family and friends in beautiful West Wales not forgetting her crazy therapy dog Barney! She is also a published author and is currently working on her second book.
Nicola Dames
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.
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.
Hali Joji
I work as a research scientist in Drug Discovery, specifically in the field of drug metabolism and pharmacokinetics. I was diagnosed with Crohn’s diseases in my early teenager and have since had multiple surgeries. I have had a stoma for 6 years now. My journey as a young person who had been thrusted into adult care has made me want to share my experiences and better support people in my position and improve patient outcomes especially for young people. I had been a 15-year-old on wards where everyone else was a good 30 years older than me.
Outside of work I am now at the stage where I enjoy hill walking, baking, knitting, reading, playing my Nintendo, and volunteering with the Army Cadet Force. I still have flare ups that see me in hospital and while colorectal care has come a long way since I had my very first surgery I still feel there is more that can be done with the aid of patients to guide improvements.
Susannah Hill
Susannah suffered serious complications after elective surgery, she found it psychologically difficult to come to terms with her experiences. Her passion is to improve the emotional support given to patients in her situation.
She appreciates how difficult it can be for surgeons when serious complications occur, hence her projects focus on the training and emotional support that surgeons may need, to ensure that they are in the best frame of mind to support their patients and their families.
After her surgical complications, Susannah retrained to be a registered nurse, as she wanted to use her experiences in a constructive way.
Ian Jackson
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.
Robin Johnston
Robert is from Northern Ireland but has lived in London for many years, having initially moved to England to read History at Nottingham University. He moved into the spirits industry as a graduate, with further studies ranging from the Chartered Institute of Marketing, to the Wine and Spirit Education Trust.
This led to a 30 year career in international sales and marketing in the premium spirits industry, mainly in whisky and gin, in the now #2 global player, Pernod Ricard. In 2006 he was awarded the accolade of Keeper of the Quaich for services to Scotch whisky. Over recent years in semi-retirement he was an early investor in and director of The Oxford Artisan Distillery.
He is 62 years old and has now fully retired. He went through stage 3 colorectal cancer in 2011, and volunteers for Bowel Cancer UK as a speaker, trainer and patient representative
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.
Natalie Woodward
Natalie is an advanced, recurrent cancer patient who underwent extensive pelvic exenteration surgery in 2020. Since then she has been an advocate and peer support for patients facing this surgery. Natalie is passionate about improving QoL outcomes for pelvic exenteration patients.
By day Natalie is a freelance dance artist and teacher as-well as an online content creator. Natalie also works with young adults diagnosed with cancer under the age of 40
Further information
For more information about the PLG, please contact info@acpgbi.org.uk