University of Greenwich

Better treating those with Inflammatory Bowel Disease

University of Greenwich
Dr Lesley Dibley
Reader of Nursing Research and Education in our Department of Adult Nursing

Nurse. Researcher. Pioneer.

Dr Lesley Dibley, who came out in 1980, has always fought to give a voice to the hidden and marginalised. She pursued a research career with a firm focus on empowering and improving the lives of people with chronic conditions. Lesley’s research looked at inflammatory bowel disease (IBD), a chronic incurable illness which affects around 300,000 people in the UK. Fatigue, pain and bowel urgency are common symptoms, and stoma surgery - where a small opening on the surface of the abdomen diverts the flow of faeces - may be required.

Although associated with better outcomes for people with IBD, many patients endure a poor quality of life to avoid this surgery. Lesley’s pioneering research explored patients’ and clinicians’ views and her qualitative, insightful analysis is changing the way this illness is managed. She found that people with IBD take a long time to decide about having a stoma; that surgeons often had preconceptions about which age groups would be open to the surgery and the way surgery was presented impacted on patients’ emotional response to its prospect.

The results of Lesley’s innovative research have been shared with 2,500 surgeons from across Europe as well as almost 1,000 specialist Nurses. And clinicians and nurses are starting to change their approach to patient care. Information about all treatment options is starting to be introduced sensitively at diagnosis. Discussions aren’t always being avoided until it becomes inevitable.

Surgery isn’t being presented as 'the last resort'. In almost all cases patients’ quality of life is dramatically enhanced. Lesley’s research was recognised in the journal Colorectal Diseases in April 2018, as ‘seminal reading for all colorectal surgeons.’

 

Endorsements

Dr Karen Kemp, Consultant Nurse, Inflammatory Bowel Disease at Manchester Royal Infirmary said: 'This major study by Dibley et al underpins the importance of introducing discussion about surgery early on in the patient’s pathway and not forming the counselling for the need for surgery as a ‘failure’ of medical therapy, but as a positive step in the patient’s journey.
“Clinical practice is now changing to reflect the outcomes of this study, in particular the ‘buddy system’, which is having an enormous impact on patients requiring both elective and emergency stoma formation’


Dr Laura Hancock, colorectal surgeon, said: “Never before has the patient's voice been more important than it is today.
“In this pioneering research Dibley et al demonstrate that the dialogue between the patient and the clinical team is essential for informed decision-making when considering stoma surgery.
“We are already starting to see the impact of this in our everyday practice. Surgery is discussed earlier as a treatment option rather than a last resort and colorectal surgeons are providing more information about the risks, benefits, goals, outcomes and alternatives of each strategy.
“Patients have contact with specialist IBD nurses, stoma nurses and patient groups at an early stage and support is more readily accessible post-operatively.
“However, there is still so much to do and dissemination of this important work to IBD clinicians is an essential part of improving patient outcomes.'