I’ve been attending appointments at UCH in London with my adult son. They’ve diagnosed him with Ehlers Danlos Syndrome and apparently I have it too. His consultant impressed me enormously, very passionate about her work and helping her patients. That first appointment was amazing - no stone left unturned. Second one, the follow-up … blimey … It was like being in a wind tunnel - in / out …what happened there!! I think I see a pattern. I conclude that these services are absolutely snowed-under.
I guess you’re going to be writing to the clinic(?)
Gosh I’m so sorry to hear of your son’s diagnosis and that you have it too. And I’m dreadfully sorry about the follow up appointment style. It’s crushingly awful really to have to endure such appointments, or at least I think so.
But yes I think you’re right - the clinics everywhere are snowed under. So sadly too. But we can help them do better, really we can, if we persist.
However you made me laugh when you said ‘you guessed I’ll be writing to the clinic’. The letter (as I’m sure you knew already) is already drafted and even by my standards it’s fairly brutal but then so was my appointment as in it was brutally incompetent. It awaits amending and titivating once I get my ‘letter’ and then it will be sent.
In the meantime I’ve asked how I get a copy of all my notes from Bath and I’m about to get a copy of my GP notes from when I was first diagnosed with PsA to include the previous rheumy’s notes in Kent too. I’ve decided the only way to manage things going forward is by all having my notes, correcting any that are wrong, and referring to them in every appointment and ensuring I also continue to have copies going forward. As one thing is for sure, I will never ever endure an appointment like I had on Monday just ever again. And I hope eventually by my efforts fewer other people will also have endure anything similar.
Ask them when the next appointment date is sent to you. I phoned Bath appointments when I got this latest appointment as mine was at 1.30pm and I needed to know where I was at on the list so I could better decide on train times both to get there and to leave. If I was last on a list I would have known I might be waiting some time to be seen whereas if I was first I should be seen pretty much on time.
I was told I was the first of the afternoon session and my appointment time was 20 minutes long.
Sadly I think it does. For Bath biologic clinics at any rate as I was deemed to be ‘out of time’ on Monday - first time in my life any doctor has told me I was ‘out of time’ most especially when I was asking whether some issues I was having could be deemed to be ‘side effects’.
Well, so sorry things are so rubbish for you. As you know, we went on Benepali at about the same time and I’ve not responded either. I had my follow up with my rheumy nurse and asked for Humira, which she’s agreed to. She doesn’t take much notice of my bloods, but goes on the painful and inflamed joint test to check if the disease is still active. She is so much better than the locum rheumy i saw last year who just looked at my bloods and then said I had fibromyalgia as I still had pain. Even though it was joint pain. Anyway, hope you get some resolution soon, I’m waiting on healthcare at home to contact about my new drug delivery… Let’s see how that goes this time!!!
Thinking of you xxx and eating cheese!!!
Well it sounds like your rheumy nurse is better than mine! Best of luck on humira - do tell me how it goes. I’m still on Benepali for the time being…with HAH doing another delivery of it later today. Sigh … I still think of you when I eat cheese.
