Patient case study: Paul's experiences of personalised care

Paul was diagnosed with Ulcerative Colitis in 1986. His previous hospital gave him repeated courses of prednisolone tablets, resulting in osteopenia and weight issues. After moving hospital, he shares his experience of what happened when his IBD service identified what mattered to him and created a personalised plan for his care.

Statement 7.1

A personalised care plan agreed by the patient, communicated and accessible to primary and secondary care should be in place for every IBD patient.

Standard 7.6

Full consideration should be given to identify and manage symptoms of most importance to the patient e.g. pain, fatigue, comorbidities, extra-intestinal manifestations, continence and sexual function. IBD patients should be investigated and managed using a multidisciplinary approach including pharmacological, non-pharmacological, dietary and psychological interventions where appropriate.

Paul's story

The care at my current hospital has been exemplary. When it became apparent that azathioprine was no longer controlling my flares, my consultant offered me a choice of adalimumab subcutaneous injections or infliximab intravenous infusions and discussed these options with me. I haven’t needed prednisolone since and I’m not overweight anymore. At the same consultation we agreed a treatment plan if my treatment was to stop working.

After every appointment, I get an electronic copy of the letter from my hospital to my GP through the MyChart app and website – this means we’re all on the same page. In between appointments, my hospital’s IBD nurses respond by the end of the next working day latest to messages on MyChart, which enables prompt adjustment of medication to maintain tight disease control.

My hospital is genuinely committed to giving patients a voice. It has set up an IBD Patient Panel, of which I am the secretary. We meet four times a year and the IBD lead consultant, senior IBD nurse and IBD psychologist regularly attend.