Fed up and disappointed

Hairobsessed123

Recently diagnosed with psoriatic arthritis December 2020

Had my first steroid injection Jan

supposed to have had a nurse ring me to talk about treatment after 2months and I hadn’t received an appointment ect so rang and I was supposed to have had a telephone appointment today at 10.30am got to 12 and no call .

Rang up rhumatology to see what’s happening my appointment was cancelled and no one told me 🥲

Explained to lady on telephone about lots of letters with different appointments one in November ? But if a long wait considering he said he will see me if I have to go on medication then a letter for August then one for June so confused 🤷‍♀️

Anyway I am now being seen at the hospital on Wednesday for a nurse appointment .

Just makes me fed up not knowing what my treatment plan is even thou I’ve had it down on my last letter .

Which stated telephone call 2months after injection

If injection hasn’t worked oral steroids GP reluctant to prescribe follow up with consultant In August or before if pain returns which it has !

sorry for moaning anyone else treatment plan and appointments confusing ?

Lilymary

Hi @Hairobsessed123, you have had a rough time of it by any standards! Even before Covid the NHS was bad for this sort of malarkey, but it’s so much worse now, as none of them know what’s happening from week to week. I have to keep reminding myself they’re doing their best in an awful situation, and it’s not their fault someone keeps moving the goal posts. I keep getting different waiting times and changed appointments, it’s so frustrating, at least if they give you a date to work to you have a target to aim for.

This will all calm down eventually, but the NHS has a humongous waiting list to catch up with, and we Arthropods are bearing the brunt of this to some extent. At least our problems aren’t life threatening. All I can suggest is be gently persistent. Most doctors would hate to admit it, and feel bad about it, but those who push for treatment are the ones who tend to get seen first.

SamBan92

Hi @Hairobsessed123

i feel your frustration. I have a lengthy introduction/story shared somewhere on this forum (I’m new and not sure how to navigate properly yet) - but it’s called Dealing with Diagnosis if you have time to take a read..

i was pushed from pillar to post for a diagnosis, being rejected by the rheumatologist for my GP referral, tests coming back negative, doctors not calling me back, telling me they would check in after NYE and then hearing nothing til March, my first in person appointment now not being til June & not even knowing when to expect treatment etc to start.

all up in the air so I’m trying just to give it a bit of time and manage on my own before I go in all guns blazing (I give myself 2 more weeks haha).

if you want to have a rant about how out of touch you feel and just a general moan please feel free to message me! X

compulsive_rambler

Is there a clinic liason officer for your rheumatology department? I found the Eye Clinic Liason Officer number for the uveitis specialist I've been referred to, they can ask questions on your behalf. Even they are very busy at the moment but they can help. I called after I got offered a telephone appointment for one of my seriously sight-threatening eye conditions that gets assessed by slit lamp and eye pressure equipment, related to inflammatory arthritis, and she agreed that it didn't sound appropriate or worthwhile, and that probably the appointment was arranged by non-medical staff, so it is worth querying if you think you haven't been given the right place in the queue or type of appointment.

Hairobsessed123

Good news !

update !! Saw rheumatology Nurse! She wasn’t expecting me 😂I wasn’t in her list but I had my appointment letter with me . And did say to her I was getting a bit confused with all the letters ect ect .

she said booking system is gone crazy .

Anyway cut a long story short we had a long chat went throu all my notes ect ect and she was so helpful !

I’m now taking Sulfasalazine !

week 1 1 tablet

week 2 2 tablets

week 3 3 tablets

week 4 4 tablets and stay in that if I can tolerate them then fortnightly blood tests for 6 weeks .

so finally feel like I’m now being treated Thankyou everyone for all your replies anyone struggling keep pushing xxx

Jewels

I'm still waiting for my appointment hopefully soon glad to hear your getting somewhere now 😁

Hairobsessed123

Hi @Jewels

keep ringing and leave messages I think u need to really push !!

my local hospital just started to open up some face to face appointments now

Goodluck with everything it’s so frustrating waiting and not knowing what’s happening xx

Jewels

Yh I know I'll ring them on Monday bet your glad your sorted hun x

Hairobsessed123

Goodluck ! I’m happy I’m now on treatment fingers crossed it works if not plenty of meds to try 🤣🤣🤣 x

Jewels

Yh thanks and good for you x

5yearsandcounting

I'd guess many people feel your pain. I've had letters cancelling appointments I didn't know I had, letters that arrive after the appointment and phone calls to cancel appointments just a few hours before the actual appointment.

I had a text recently from my health board asking me if I still wanted the follow up appointment but unfortunately I have arthritis in several joints, I'm seeing 3 different specialists and the text didn't specify so I have no idea which follow up they mean, is it for the operation I had on my elbow, the follow up with the gastroenterologist or to see the T&O surgeon who will hopefully replace my hip soon.

It's frustrating and I hate to complain about people who are working so hard, specially right now but the communication is often just not good enough.