Picture this — you’ve had show stopping stomach issues for years but no idea why. You finally get the proper diagnosis from your doctor: you’ve been suffering from inflammatory bowel disease all this time.
You would think the next steps include medical support, advice, and instruction from your care team. Yet many professionals have limited, if any, training on IBD. Even if you get referred to a specialist, they may not have the availability and time you need. You’re left feeling alone and confused with a very complex condition.
Shocking scientific stats
A study presented at the Crohn’s & Colitis Congress in 2019, brought light to just how dark patient-barriers to accessing IBD care are.
Researchers recruited 20 adult patients to receive their input on the disease and the care they received. After analyzing collected data, researchers concluded that the main patient struggles are:
- Lack of multidisciplinary care with psycho-social support
- Delay in being diagnosed
- Inability to effectively receive and provide communication with health care providers
Very few services have the ability to offer patients psychological support. IBD nurse specialists are few and far between. Typically patients have to wait over a year to even get their diagnoses.
“One third of people living with Crohn’s or Colitis don’t have the support of a specialist IBD nurse.” – Crohn’s & Colitis UK
New standards raise the bar
Previous IBD standards were created in 2009 and updated in 2013. Significant improvements have been made, but there is still a lot to be done to reduce the gap between patients and an appropriate care team.
At the British Society of Gastroenterology annual conference in 2019, 59 statements were shared that describe what good care and treatment looks like for IBD. The goal was that every IBD service in the UK will work to meet these.
The new standards were launched in June, aimed to drastically improve how people with IBD across the UK are cared for.
In addition to the new IBD standards, IBD services will be benchmarked for the first time, helping to assess how the services meet the set of statements. This will be done with the IBD Benchmarking Tool which includes a self-assessment of gathering evidence and answering questions as a multidisciplinary team and with patients.
The results will be released in 2020 in order to provide and opportunity to make solid change and support business in determining where they can improve to better the care of IBD.
Charities creating change
Health Europa featured an article on how these IBD charities are on a mission to train 100 new IBD nurse specialists. Their goal is to provide nurses with more access to psychological and dietetic support in order to help them identify and diagnose IBD sooner, with the ultimate goal of improving IBD care.
At NoriHealth, we’ve been on a similar mission from the start.
Nori: from diagnosis to “what disease?”
Preventative care encompases getting the right services and support to help manage the problem. Yet the diagnosis, education, and support around IBD is lacking. This is the dilemma that the creators of Nori are determined to change.
The treatment for Crohn’s and colitis vary drastically from person to person, which makes knowing what to do even more vague. In some cases, IBD is managed with drugs, while others need surgery. There’s no specific diet that works for everyone.
Without someone help walking through one step at a time, the journey of IBD can be both a treacherous start and a rocky road.
At NoriHealth, we recognize this problem and provide a solution through a personalized chatbot coach program. NoriHealth is on a mission: to provide people suffering from IBD with safe, consistent, and high quality care.
Nori is an AI-driven chabot coach for people living with a chronic disease. Nori will help you understand what it’s like to live with a chronic bowel disease and learn how to discover and change lifestyle factors that impact how well you feel. She’ll help you understand and change lifestyle behaviors to decrease symptoms and improve overall quality of life. This is all done safely and confidentially. The more people that talk with Nori, the smarter she becomes. The whole community benefits.