Who are we? : the Bowel Disease Research Foundation

14 October, 2019

Bowel Disease Research Foundation (BDRF) exists to fund research into bowel disease with a clear purpose – to improve the lives of people affected by bowel cancer, IBD & other bowel disorders both right now and in the future.

BDRF is the charity arm of the Association of Coloproctology of Great Britain & Ireland (ACGBI) – the professional association for colorectal surgeons and specialist nurses working in the British Isles. So the chances are, if you’ve had surgery on your bowels, you were probably operated on and cared for by members of this association.

It’s easy to think of research as something that happens in a lab, done by people with white coats, microscopes and petri dishes – but a huge amount of our work is practical and focussed on day-to-day life both in and out of hospital.

We believe our research has a massive role to play in making sure people with a stoma get the best possible support and care – before, during and after surgery.

We’re delighted to be contributing to Tidings – and would love to hear from you on what you want to read about from our research in future issues.

What we do – prioritisation and ongoing studies

In the last few years, we’ve been bringing surgeons, nurses, patients and fellow charities together to define what our research priorities should be – shaping our agenda for the research we fund.  Through a series of interactive workshops, online voting and public surveys, we were able to develop a list of priority research questions for researchers to begin to tackle.

It goes without saying that life with a stoma comes with its own unique set of challenges – be they physical, emotional or psychological as people adjust to such a major change.

Unsurprisingly, improving quality of life for people with a stoma – particularly reducing and alleviating feared complications like parastomal hernia – consistently featured as a major priority for patients and healthcare professionals alike during this process.

In a particularly important and ground-breaking moment, patients and surgeons discussed attitudes toward stoma surgery – whether this constituted a ‘failure’ in treatment or ‘last resort’, and how this sort of language can make people feel. Many of the medical professionals in the room had their attitudes and approaches completely changed, and research has subsequently been developed to address communication and stigma.

The process helped to launch the CIPHER Study, a major national trial looking at the best method of surgery to form a stoma and reduce the likelihood of a parastomal hernia.

We’ve also funded work focussed on cancer patients’ attitude towards potentially having a stoma and how this affects their treatment preferences. It is an innovative attempt to answer some of the pressing questions around treatment from a patient point of view, and we hope will help inform healthcare professionals about what factors patients find important when making decisions about their treatment.

In the last two years, we’ve teamed up with our friends and colleagues at the Ileostomy Association and Kingston Trust to fund even more research.

These projects look at major aspects of everyday life. A team in Scotland are looking at exercise as a method of reducing the risk of parastomal hernia, aiming to show that patients can safely take part in a wide range of physical exercises, removing a lot of the fear and stigma around an active lifestyle with a stoma and freeing people to enjoy their lives as they wish.

Excitingly, we’ve even funded a study led for the first time by an ileostomy patient. Her work will assess what expectant mothers with a stoma experience when wanting to start a family, while they’re pregnant, and after delivery. This will help make sure future patients have much better information to help them make decisions.

What would you like to know?

We’d like you to be part our research – and to let us know what aspects of our work you want to read about in future issues of Tidings. Research studies? Interviews with surgeons and nurses? Perhaps stories from patients involved in our research?

At a recent conference, we ran a campaign called #BowelHopesAndFears. In it, we asked conference attendees and our social media followers to let us know what they hope to see achieved through research, and what obstacles might hold it back.

You can help us fuel conversations about what are the most important areas to address in our research and help sharpen our focus.

You can read more about that campaign, and how to contribute, on our website at :

www.bdrf.org.uk/news/ceoblog/hopesandfears

Or by following us on Twitter (@BDRF1) and on Facebook.

We know that research has a huge part to play in tackling the daily challenges of life with a stoma, developing knowledge that helps people live their lives to the absolute full.

Please let us know what you’d like to hear about in future, and we’ll do our best to oblige!

You can contact BDRF directly by e mailing Glen Saffery – Research Coordinator gsaffery@bdrf.org.uk