I am currently being treated for a flare up of my crohns disease. This has been an ongoing issue since I first contacted the IBD team on the 19th April this year. I was started on high dose steroids tapering over 8 weeks and told I would be discussed at the MDT meeting with a view to starting on Ustekinemab. Since then I have had a hospital admission with increased pain low calcium. Care given while I was an inpatient was very good and I met with a gastro consultant who was quite frankly a breath of fresh, the first I have experienced in a long time. They made a clear concise plan of treatment and I was discharged home on a further course of oral steroids (8week tapering course again) which I would require to be on in order to cover the lag time for the ustekinemab to take effect (3weeks) with a plan for the IBD team to contact me again 2 weeks post discharge following discussion at said MDT meeting. I was also told I would receive literature on the biologic drug I was to be started on ( still not received this) and that this should be a straight forward transition as I have had the necessary blood profile carried out previously for other biologic therapy.
I have been very patiently waiting for the follow up treatment to start. Imagine my disappointment when still after 5 weeks there has been no contact from anyone regarding any of the plans above. I did contact the IBD nurses who have told me that I am on a list for the MDT meeting but they don't know when that will happen. I was also told that the list is very long due to the backlog of patients and doesn't always happen every week or have all the consultants present. I take that to mean that if your consultant is not present then your case doesn't get discussed but I'm not entirely sure. I am well aware of the current situation with backlogged waiting lists and overworked staff and I am fully sympathetic to the pressures that everyone is under. I have worked throughout the pandemic within the NHS and moved to an area which was extremely challenging, stressful and unfamiliar to me and has probably contributed to my current crohns flare. I am currently off work sick and I am very keen to get back to work to support my colleagues who are still struggling with the pressures of the workload due to the backlog. I have 3 weeks left of my oral steroids and then I have no cover to stop the crohns inflammation from becoming an issue again. The consultant was quite clear that I would be starting on the biologic drug whilst on this current course of steroids. There is no contingency plans in place while I wait for the MDT discussion. As you can imagine this is causing me a great deal of stress as I worry that I may require another emergency hospital admission which I would very much like to avoid. I would like to be very clear that I am not looking for any special treatment I just want the plan that was made on my hospital admission to be followed through in the timely manner I was assured would happen.
"Inflammatory Bowel Disease service"
About: Royal Alexandra Hospital / Gastroenterology Royal Alexandra Hospital Gastroenterology Paisley PA2 9PN
Posted by Nicrohns (as ),
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