I wish appointments came with meeting agenda's

[Diagnosis_Collector]

Long story short, everyone (NHS and private rheumatology and NHS dermatology) agree I need to change my medication to rituximab. I saw NHS rheumatology in July and had this discussion and he said it would be 4-5 months until I heard. Private rheumatologist I saw in August also confirmed this and he works at the lupus center where I'm being referred to so figured he knows when the MDT's are taking place. Dermatology (who I also saw in August) also recommended rituximab in their appointment letter however I've now received an appointment in September with rheumatology to 'discuss my medication following letter from dermatology'. I'm stressing out as I don't know what there is to discuss. We've already discussed rituximab. If it's another medication I wish they'd tell me so I could do research before hand and come prepared with questions!

Don't get me wrong, I'm incredibly grateful I have appointments and also have a very thorough doctor but I find appointments very overwhelming. Having an intrusive discussion about your health and then to process new information and ask questions all within 15 mins is a whirlwind, made worst by the brain fog that can't remember anything. 🫨 Knowing what is going to be discussed beforehand would be so immensely helpful. I like to be prepared. (And no, I don't have anyone who could come to the appointment with me who also knows about all my health issues)

Sorry for the rant, I just needed to vent to people who get it. I have 6 medical appointments in September and I'm just so over explaining my health whilst also trying to understand it myself with an added dose of anxiety about changing my medication 🙃

[StriatedCaracara]

I draw a gingerbread man diagram that I annotate with symptoms. Some I do in same colour if symptoms happened together. I take a photo of the drawing and email it in and also have scanned copies I take to appointments so doctor has own copy to look at.

I number the points and it helps me to remember everything.

I find visual reminder easier than meeting notes. I think it helps doctors to see what is happening too. Means also that I can focus on the what they say about other things.

These paper patient diagrams I also can file so I can compare over time, as drug treatments change.

[OldTed60]

I have systemic sclerosis and start Rituximab finally in a few weeks. To be fair to my consultant it was me who stalled 18 months ago because I knew I needed major colorectal surgery - which I’ve now had but likely will need more in 6-12 months or so. But as I’m becoming malabsorbed I emailed my consultant after surgery to ask if we could discuss this option again. Instead of seeing her she arranged for me to see her sidekick a few weeks ago to specifically discuss the practicalities of me starting Rituximab she said in her reply. So I felt the agenda was built in. But to my frustration her sidekick wanted to start from perspective of did I need this treatment on top of my Mycophenolate, questioning and challenging me even though I was only 8 weeks post surgery and 3 weeks post Covid. Very different to your situation but I really could have done without this dr playing consultant with me and making me feel I had to justify myself re current and future treatments. My bloods came back v wonky with CRP 120 after but guessing this was due to Covid. Anyhow she had to report back to my Rheumy, who apparently is happy for me to start asap, so I guess that’s all that matters although this dr made me feel so doubting and I hope my Rheumy doesn’t put me to see her again. X

[eurocat]

I feel exactly the same. I was having my meds changed after the internal medicine specialist's analysis and evalation, and he spoke to my other specialist about it and messaged me to tell me the other one was "on board". Then when I went to the appointment with the other doc I discovered he wasn't on board at all! I had gone in expecting to sign a consent form or something, not at all prepared to explain everything again and try to persuade the doc of the internal medicine's diagnosis! I was so taken by surprised I was hardly able to explain anything.

A message sent to the patient to say what the point of the appointment is would be incredibly helpful and save a lot of stress, anxiety and wasted opportunities.

[Diagnosis_Collector in reply to eurocat]

Yes, this is similar to my situation. Appointments are overwhelming without having new options sprung onto you without warning. I just don't understand why the sudden change in mind when we've discussed rituximab for so long.