How we receive our IBD treatment has undergone major changes since COVID19 appeared earlier this year and we are unlikely to return to the old model, ever.
Is this a good or bad thing? I suppose your answer will depend upon your current health status, if you’re waiting for surgery, who your first point of contact is or which monitoring regime you are following.
I have a great GP but for anything to do with IBD, blood, PVT or gallbladder issues I go straight to my hospital consultants. (Guy’s & St.Thomas’ since 2011). For many years I only had IBD to consider and when it was in remission I would see my gastro consultant once a year or even once every two years. After 2009 life became more complicated and sometimes there would be two or three appointments or procedures in one week! I’m not sure how I would have coped if we had been in lockdown then. How willing would I have been to simply accept telephone appointments?
In future I expect the emphasis will shift towards self managing our condition. I know that, for some treatment paths, this has been the norm for some while. Last time I went for a Vedolizumab infusion I was surprised to be asked if I wanted to switch to the subcutaneous version. I knew that the option would become available at some point in the future but its introduction has been hastened by wanting to limit visits to hospital, especially as many patients, myself included, are categorised as “extremely vulnerable”. Do I want to swap?
I treat a trip to Guy’s IBD infusion unit as a day out in London. The visit allows me to drop in a sample for calprotectin testing, get my bloods checked and have the chance to build a relationship with the IBD nurses face-to-face. By swapping to self administered Vedo I would have to arrange for the calprotectin and blood tests to be done by my GP, who would need a request form faxed (!!!!!) from Guy’s. The calprotectin would be sent to the Brighton lab which do not measure values above 600. (The report simply comes back as “>600”). Not a lot of use if you are looking at trends above this value. Also an issue with home testing kits that are available.
I have decided that, on balance, I’ll take the risk of public transport up to London and visiting a busy hospital so that it is a “one stop shop”.
Just before we get to the topics you might be wondering why we aren’t using Zoom? We did a couple of #IBDAudience video chats earlier this year and afterwards a few IBDers contacted me to say they would like to have taken part but did not like appearing on camera. Others found the timing difficult because of getting evening meals, putting kids to bed etc. The beauty of the Twitter chat is that people can dip in and out as they feel able or just lurk if they are happier. They can also respond to earlier topics at any time and the conversation can then keep going past the allotted end time, getting responses sometimes days after the chat.
Here are the topics for the #IBDAudience chat on Thursday 3rd December, starting at 20:00 BST :
T1: How has your treatment been affected by COVID measures?
For instance have your face-to-face appointments been changed to tele-appointments? How do you fell about this? Do you have the option of video calls?
T2: Are you still having regular blood/calprotectin tests carried out? GP/Hospital/at home? Has this caused any issues?
T3: Has your monitoring regime changed? Have you had an endoscopy, MRI scan etc, since March or are you waiting for one?
T4: Have you been offered a switch to subcutaneous medication in lieu of infusions? Have you taken up the offer? Has it worked out OK?
T5: Are you happy with the shift towards greater self management?
T6: When COVID is under control and we have a “new normal” are there any changes you would like implemented in your treatment ?
CT: Closing thoughts?