An Appointment Of Disappointment

I had high hopes for my rheumatologist appointment on Monday. It was my first face to face consultation in over 2 years and I felt weirdly excited.

The night before the appointment had a childhood Christmas Eve quality to it. I struggled to sleep and stayed up late checking the list of questions I wanted to ask - rather than presents I hoped to find under the tree. To my disappointment, what followed was the medical appointment equivalent of an empty stocking.

Getting there

I hurled my sleep deprived body out of bed and dragged it onto a bus for the two hour journey to the hospital. Ironically, this was probably longer than I managed to sleep the night before.

I know 2 hours seems like a long way to hospital for someone who lives in London, but my area is a bit more "eventful" to say the least. Prior to my diagnosis (when I woke up unable to move) I decided to go to A&E in a quieter part of town so I'd be seen more quickly. This turned out to be a great decision as the rheumatologist there was amazing. It was definitely worth the trek across town to receive her treatment.

Surprisingly, on this occasion my usual wake up stiffness and pain was really low. I suspect this was because my brain was still waking up from its two hours of sleep and was not registering anything yet.

The appointment

My name was called by a nurse I hadn’t seen before. This is not unusual at all, but ordinarily a nurse would take my blood pressure before leading me into the doctor's office. However, on this occasion these tests were skipped and it soon became apparent that I would not be seeing the rheumatologist I had braved the long trip to see.

The nurse handed me a form to fill out - it was a questionnaire to rate my pain out of 10 in different scenarios. I needed to apply for funding to continue my treatment of Eternacept (or Enbrel for my friends outside of the UK).

The disappointment

I handed back the completed form and braced myself for some kind of check up followed by a Q&A session. But I was swiftly told: "Thanks for that, we'll see you again in 6 months."

I was completely taken aback. I had expected more than a 5 minute form filling session. After being housebound for over a year and a half while shielding during the pandemic, I was eager to know if my body was affected in any way. When I asked if they were going to perform any health checks, I was told I will be given some blood tests in a few months and they’ll take it from there depending on the results.

This was a little concerning but I valiantly pulled out my notepad of questions and asked if I could go through a few things with her. She told me that she was not qualified in these matters and handed me a couple of leaflets (that I had almost certainly received after my diagnosis). She said she hoped I would find the answers in these and sent me on my way.

My reaction

I think the most frustrating part of all this was that it all could have been done by phone or email. During this COVID nightmare I was ordered by the government to lock myself away due to my increased vulnerability. I have experienced a lot more social anxiety after being away from the rest of humanity for so long. This makes getting on a long bus ride a pretty distressing situation but I braved it in the hope that this appointment would be worth it. It absolutely was not.

I believe those of us with underlying health conditions were worst affected by the pandemic. Not just because we are more at risk of serious illness, but because so many of our treatments were put on hold and appointments cancelled. I had hoped this would improve when things started to open up a bit more. Sadly this doesn't seem to be the case.

Final thoughts

I was certainly annoyed that I wasn’t given a chance to ask any questions - leaflets obviously lack the personal touch. However, I was more frustrated by the fact that my condition wasn't checked or monitored in any way other than answering a few questions on a form.

I find it very odd that AS is a progressive condition, yet there doesn't seem to be much done (at least in my experience) to check how or if it is progressing.

It seems as though people with chronic conditions only seem to get any attention when things get really bad. Shouldn't there be more done to monitor and prevent things getting to that stage rather than just focusing on damage control when it's potentially too late?

Disappointingly, it doesn’t look as though my "empty stocking" is going to be overflowing any time soon. Am I being a drama queen for feeling that I deserve more?

I would love to hear from anyone who has had a similar ordeal or indeed anyone who has had positive experience.