What the IBD Standards mean for patients

Graham Bell is a patient diagnosed with Ulcerative Colitis, a member of the IBD Standards group and also sits on the Board of Trustees for Crohn's & Colitis UK.

Having ‘co-hosted’ Ulcerative Colitis for many years, an unwanted condition from the IBD family, being asked to participate as one of the patient representatives in the IBD Standards group was a no brainer.

I am passionate about patient welfare and the need to improve the lives of people and their families who live with Crohn’s or Colitis.

The revised 2019 IBD Standards have taken the views of hundreds of people with Crohn’s or Colitis, prioritising their key areas of concern and ideas for improvement. Our opinions were collected through online surveys and focus groups and helped IBD UK, a group of 17 professional and patient organisations, enhance the care standards for IBD patients.

Patients need to see that they will able to use the new standards to help them make their own healthcare decisions. We all know those decisions must be individual to what we need, including access to a whole range of additional services. Our wellbeing is improved when we have access to professionals like dietitians, psychological support and specific care timeframes. The treatment of IBD, whether that is receiving an early diagnosis, discussing surgery options or maintaining remission, requires the involvement of more than one healthcare professional. It also must include ‘me and you’ the patient. The multi-disciplinary team (MDT) is valuable and critical in developing a patient healthcare plan, and patient involvement and joint ownership of that plan can only add benefits.

Being able to maintain a quality of life for patients and their families for me is critical and I sincerely believe the updated standards will go a long way to achieving this. Take time to look at the standards to know what you should expect and do not expect less! They are detailed but Crohn’s and Colitis are complex.

I would encourage all patients to closely monitor their care and not to be afraid to raise their concerns and questions with their Consultant, Doctor or IBD Nurse specialist.