Patients are a virtue

Who knows best - doctor or patient?

There are many many opinionated doctors out there, as well as many many opinionated patients.

Opinions matter.

Recently there has been a lot of debate about doctors dropping the Latin and using plain English. As a proud owner of a B grade at Latin GCSE I’m obviously highly skilled in my amo, amas, amat, amamus, amatis, amant but I can on the surface see a real need for doctors to talk straight when giving information to patients.

As always, it’s not as straightforward as what we see on the surface - if doctors don’t use specific medical terms - albeit in Latin or Greek - then this could lead to misinterpretation and misdiagnosis.

When it comes to medical research and understanding who knows best, we at Bowel Disease Research Foundation have championed the collaborative approach for many years now.

Who knows best? We all know best of course!

Research cannot be carried out in silos. Nor should it happen without input from patients.

We use lots of labels - we have to and it can be useful. It’s also useful to strip away the labels and talk about “people”.

“I’m not a patient - I’m a person with bowel cancer” was a very powerful opening to a presentation I heard last year at one of our Delphi Patient and Public Involvement Days.

You don’t have to be a patient to have experienced bowel disease - you can just be a person with a bowel. You could even be a person without a bowel - many thousands of people live without one.

I asked Nicola Dames (ostomate 2006) CEO of Vanilla Blush, why taking part in research is so important:

“When I hear your Stoma story, I hear my words from your mouth. When I tell my Stoma story, I see your head nod and your mouths mimic. Ours is a shared story, a unique story, a Stoma’s story. Make sure to have your voice heard.”

We all know that you can’t just throw money at medical researchers and hope they come up with the answers - prioritisation of research is essential.

Patients have a key role to play in this because they are the experts of their own condition - they have no choice in having to live within the constraints of the illness or disease that they have. They know what works and what doesn’t and ultimately, they are the masters and mistresses of their own bodies.

There is no such thing as THE patient voice - every body is different - we’re all individuals and our guts with their billions of microbes and bacteria floating about are a huge ecosystem that we have only just begun to even scratch the surface of being able to comprehend.

You can see what a big problem bowel disease therefore presents - thus we need an organisation with a big and bold vision to sort this mess out - led by patients and professionals.

Now, where on earth can we find one of those?

2020 Vision is an ambitious global project involving surgeons, patients and charities that will define and prioritise the most important questions that need answering in bowel disease medical research.

We know that the 2020 Vision project will make a huge difference to the lives of potentially millions of people who are suffering from problems with their bowels. Just how much of a difference will depend on how much we can raise in order to fund the research.

I asked Professor Robert Arnott, who is Chairman of the ACPGBI Patient Liaison Group and also a Patient Trustee of the BDRF ,his point of view of why taking part in this survey is so important;

“2020 Vision has the interests of patients at its centre. It offers those suffering from bowel disease a number of important opportunities. The first is close involvement in determining research priorities and the nature of the research itself. The second is the new opportunity for patients on three continents to work together and develop links between themselves in the interests of better research.”

This really is a unique opportunity for EVERY BODY to have their say - even you.

Yes you!

To have your say in the topics that need to be addressed in bowel disease research please complete this quick survey

Thanks for reading... and thank you in advance for your opinions

About the author

Peter Rowbottom is CEO of Bowel Disease Research Foundation. (BDRF)

BDRF fund research into Bowel Cancer, Inflammatory Bowel Disease, Continence and a myriad of other bowel conditions and afflictions.

BDRF is the charity of the Association of Coloproctology of Great Britain and Ireland

You can email Peter — [email protected]

Your feedback is very much welcomed.