Our latest peer reviewed publication into UC from our LUCID Dataset - Living With Ulcerative Colitis; Identifying the Socioeconomic Burden in Europe, as well as news about the great work Seb Tucknott, one of the co-authors, has been doing.
Seb was diagnosed with UC in 2008 and spent many years struggling to manage his condition. After trying many differentmedications Seb found he was left with many life-affecting symptoms (such as joint/muscle pain and headaches). Seb struggled to learn more about UC, finding the information available at that time fragmented and overwhelming. He eventually decided to run a crowdfunding campaign in 2015. With the money raised, combined with his own web-development skills, he helped build the first version of the IBD Relief website, which was launched a year later.
Seb has continued to add clear and engaging content to the website. Always with a large focus on patient stories and self-help guidance. This past year, Seb has also been working with the IBD team at Addenbrooke’s hospital on IBDmate. An online educational resource which allows health care professionals to prescribe specific information to young patients and their families.
Seb recognised a major problem for new patients when first being told their diagnosis was that they wouldn’t take much in. As he described it, when you’re first diagnosed, often after a long time of suffering from symptoms, you know you’re in the room with the nurse and you know they’re telling you things you know you should be listening but it can still feel like you’re in a dream.
However, IBD nurses also have important information they need to communicate to patients and limited time during which they can do this at face-to-face appointments. For example, when patients are first prescribed, Azathioprine, a drug that can ‘calm’ the body’s immune system, IBD Nurses must ensure they provide patients with details on potential adverse events. Especially since this medication also requires regular blood tests, both before and during your treatment, as it can sometimes affect the liver, kidneys or bone marrow.
IBD nurses might see 2-3 new patient a week who are starting therapy on this drug and typically spending 30 mins with young patients and their families explaining the possible implications. Using IBDmate nurses can instead ‘prescribe’ this information to their patients. Who are then free to watch the videos as many times as they like, after the shock of receiving their diagnosis.
This can have small but significant implications on the IBD teams’ productivity. If each IBD Nurse sees 150 new patients a year that’s 75 hours of time that could be saved. HCD Economics typically applies a cost of £50 per hour for a Band 6 Hospital Nurse, considering wages, salary oncosts, qualification costs, capital overheads and non-working time. In monetary terms this would be about £3750.
Most of the videos on IBDmate take the form of documentary style informal conversations between patients and health care professionals. Stories that provide patients a far greater chance of recalling information. As someone who reads a lot of research in medical journals this is something I know all too well. Maybe we’ll have to get Seb to help us film an interview discussing our latest LUCID article!
If you’d like to continue the IBD conversation, please reach out to firstname.lastname@example.org