The Bowel & Cancer Research charity is spearheading a pioneering scheme for patients who have recently been diagnosed with bowel disease.
‘Bowel Buddies’ will be trained mentors offering a support service to people going through the trauma of diagnosis and treatment.
The fledgling scheme is being developed in co-operation with three hospitals: The College of Medical and Dental Sciences, University of Birmingham; the Royal London in Whitechapel and the University Hospital of North Durham.
The charity’s aim is to establish Bowel & Cancer Research’s approach as the gold standard for a patient-centred support scheme.
The Bowel Buddy scheme is the brainchild of Patient and Public Involvement Lead at Bowel & Cancer Research, Lesley Booth MBE, who is a bowel cancer survivor herself.
“I had Inflammatory Bowel Disease for 30 years and spent a lot of time in hospital waiting rooms. You could see patients getting worked up and feeling distressed and lonely,” she said.
“When I was told I had bowel cancer, I left the room and heard the consultant’s door click shut behind me. No one spoke to me. If someone had offered me a cup of tea, or a friendly voice, that would have helped.”
“It’s not the fault of anyone in the NHS – they are under enormous pressure and there’s no time to focus on the emotional feedback of a devastating diagnosis. But there is definitely room for an outpatient mentoring system from a friendly ear – someone who’s not family, who has been through something similar themselves and who has time to listen.”
“It’s particularly important for patients with bowel disease which is still a taboo subject. Patients may be happy to discuss a heart condition quite openly. That’s not the case for bowel disorders.”
Bowel & Cancer Research believes that training for new Bowel Buddies is essential and is therefore consulting organisations such as the Samaritans for advice.
As the scheme is rolled out, volunteers will be sought from patients who have signed up to the charity’s People and Research Together (PaRT) register.
Michelle Henderson is a Bowel Specialist Nurse at the Durham Bowel Dysfunction Service, University Hospital of North Durham – one of the hospitals involved.
“Our service sees patients with a range of chronic bowel conditions such as constipation, faecal incontinence and Irritable Bowel Syndrome. We discussed the concept of the Bowel Buddy scheme with our patient support group and are keen to be involved. Our patients have to learn to manage and live with a chronic condition and our patient group thought a Bowel Buddy could be helpful in coming to terms with this,” she said.
“Receiving a diagnosis of a chronic bowel condition can have a devastating impact on patients. They are not always able to take in the full impact of what a doctor or nurse is telling them and can be deeply apprehensive about what lies ahead. To have someone alongside them who has experienced the same diagnosis to act as a mentor could be invaluable at a time which can otherwise be lonely and frightening.”
Lesley Booth said former patients possess many qualities which can make a huge difference to new patients at a very vulnerable time.
“The fact is that, despite my diagnosis, I’m still here. Patients like me can provide compassionate support and understanding. We know how to navigate the health care system. We also represent real-life examples of people who have faced a similar situation and live to tell the tale. That’s what you need when you’ve received the body blow that you have bowel cancer,” she said.
More information from Lesley Booth, Patient & Public Involvement Lead, Bowel & Cancer Research, [email protected].