Laura died of bowel cancer, aged just 31

New funding to aid cancer bowel diagnosis in the young

The Department of Health has awarded funding for a new research project run by the University of Exeter and Bowel Cancer UK.

The research will lead to the development of a new clinical decision aid tool which is aimed at speeding up the diagnosis of bowel cancer and bowel disease in patients under the age of 50.

The research, which will commence in July 2014, will be an 18 month long project, and is a direct result of the campaigning by charity Bowel Cancer UK to improve diagnosis of bowel cancer among people under the age of 50 as part of their ‘Never Too Young’ campaign which was launched last year. Deborah Alsina, Chief Executive of Bowel Cancer UK, is on the project team.  

Research conducted for the Never Too Young campaign identified that younger patients were experiencing significant delays in diagnosis leading to poorer outcomes and the need for more aggressive treatment.  For example, Bowel Cancer UK’s survey of 109 younger people with bowel cancer reported that 42% of women visited their GP five or more times before referral and this is also reflected in the Royal College of General Practitioners own reports led by Professor Greg Rubin.

The team will be led by Professor Willie Hamilton, Professor of Primary Care Diagnostics at the University of Exeter Medical School, with Greg Rubin, Professor of General Practice and Primary Care at Durham University. Both are members of the Department of Health funded Policy Research Unit, so already work together closely. Each has a very strong track record in cancer studies.

The research, which will focus on extensive patient data, will be conducted at the University of Exeter medical school under the supervision of Professor Hamilton. The team has already launched similar decision aid tools among GPs across the UK, providing estimates of the risk of cancer.

Public Health Minister Jane Ellison said, “We want to lead the world in terms of cancer care and making sure we support valuable new research is a key part of this.”

“The earlier bowel cancer is diagnosed, generally the more treatable it is. However, bowel cancer is rare in younger people so it is more difficult for GPs to know when to refer. This new research could play an important part in helping GPs make that important decision on referral.”

The tools come in several formats - paper, calendars, mouse mats – and as a result, tens of thousands of mouse mats have been distributed to GPs across England. An electronic version is also a potential option for clinical decision aid tools, whereby the values are integrated into the GP's computing system and any time a GP inputs a code for a cancer symptom, the system searches for additional symptoms and prompts the GP to the overall risk. However the bowel cancer specific tool does not work well in younger patients because they are at a lower risk. 

Professor Hamilton said: “We recognised early on that the research needed to be much broader than just cancer, thankfully with most bowel symptoms the risk of cancer is relatively low, but it’s not zero. GPs see many younger patients with bowel symptoms and it can be difficult for them to determine which of those should be referred through for diagnostic tests. We therefore decided to look at both bowel cancer and inflammatory bowel disease together to identify which combination of symptoms indicated an increased risk and need of specialist investigation.”

“This is vital because of the increased risk of advanced disease progression with inflammatory bowel disease, which includes Crohn's disease and ulcerative colitis, and reduced life expectancy for bowel cancer.”

Sean Duffy, National Clinical Director for Cancer for NHS England, said: “The UK lags behind much of Europe in terms of survival from bowel cancer.  We need to change this and this includes being able to identify bowel cancer better in patients under the age of 50. Current national guidance for bowel cancer focuses on older patients and their symptoms, which adds to the difficulty of identifying which younger people with symptoms need further investigation. I believe this research leading to the development of a clinical risk assessment tool will help address this and could inform future policy on referral decisions.”

Deborah Alsina, Chief Executive of Bowel Cancer UK, commented: “We are delighted this award has been made by the Department of Health for research by Professor Hamilton’s team. We have been campaigning passionately about how best to tackle the issue of early diagnosis in younger patients. Although it is relatively rare, a diagnosis of bowel cancer in younger people has a significant impact on the patient and their family and friends, affecting them at a key stage of their life in so many ways.”

“We are currently losing too many younger patients who, if they had been diagnosed earlier, could have been successfully treated and others are having to go through gruelling treatment for more advanced disease that will have a major impact on them for the rest of their lives. This research is therefore an important step towards addressing this and stopping people dying so unnecessarily.”

Bowel Cancer UK’s 'Never Too Young' campaign, which was launched last year, aims to raise awareness of bowel cancer in patients under the age of 50. In 2012, over 2,000 younger people were diagnosed with bowel cancer in the UK, of which 24 were in their teens.

The campaign is highlighting that the number of people under the age of 50 who are diagnosed with bowel cancer each year in the UK is slowly rising. In 2010 there were 2,018 people under 50 diagnosed, compared with 1,698 people in 1999. Among them was Laura, from Glasgow who died on Mother's Day 2013, aged 31. She was diagnosed with bowel cancer when she was 30. She had symptoms for more than two years before she was diagnosed. Unfortunately, she didn’t understand their significance and was re-assured when her doctor told her that it could not possibly be bowel cancer because she was too young.

Despite gruelling treatment, on the 1st March last year, Laura married her childhood sweetheart, Alan, at their dream wedding at Glenskirlie.

Laura’s mother, Lesley Shannon, spoke about her loss. “If Laura had been given a colonoscopy in time and not ignored, as she was considered too young, she would be here today. More has to be done to raise awareness of bowel cancer in young people, to save lives and to stop this happening to others, doctors have to be re-educated to see and search for signs of cancer and to accept that it is not the case that 'bowel cancer is only an old person’s disease', as was told to us. My beautiful daughter should be living her new married life, fulfilling her dreams and starting a family. She was robbed of her precious life, due to bowel cancer not being detected early enough.”

Deborah Alsina, Chief Executive of Bowel Cancer UK, commented, “Every contact I had with Laura and her lovely mum, Lesley, made me feel their pain and grief, yet they supported our ‘Never Too Young’ campaign because they wanted this to stop. After all, this should not have happened to Laura, to anyone.”

 

 

 

 

 



[1] Bowel Cancer UK. Never Too Young: the experiences of younger bowel cancer patients. London: BCUK, 2013.

 

Date: 30 April 2014

Read more University News