Rheumatologist ghosting! 👻

[Yellow-mellow1205]

Hi, I've had RA for about 10 years and I've got OA In right foot, hands, neck and lower back where I've got 3 bulging discs. I also have trochanteric bursitis in both hips. I'm under the orthopedic for my foot and the bursitis (different consultants) but I've not had an appointment with my RA consultant for over 2 years. I've called my consultant's secretary and just keep being told I'm on the list. Is anyone else having the same problems getting an appointment with their rheumy?

[pammi2]

YOu wating 2 years for an appoinment, that is a disgrace why are you or someone you know not down the hospital banging the RA door? why are you not speaking to PALS complaint team about this. you have to be your own dr

[gailboddy]

5 years since my last f2f appointment !!!!!

[pammi2 in reply to gailboddy]

why are you accepting this?

[Spanelmad]

I would ring nras for help with the hospital

[Runrig01]

My rheumatologist seen me in October 2023, after having severe pain in my knees, that had me being sent to A&E. He said in October that he wanted a F2F in 6 months. I gave just received one for Jan, which will be 15 months since I last had an appointment. I had phoned to chase my biologic prescription, as the new one hadn’t been sent, and suspect this has triggered receiving this latest appointment.

I would start by contacting PALs, as they usually are quite helpful. Unfortunately with the state the nhs is in, we have to be. Proactive in our own care.

[pammi2 in reply to Runrig01]

go to PALS

[sylvi]

I will also add to others to contact PALS and complain to them. Also ask to be referred to another hospital in your area within reach to your darling . xxx

[Gaz227]

that’s crazy , I usually get an app within 12 months , but nurses on in the phone if I need advice and if they are unsure they pass me on to Rhuemy , I have an adrenal issue also caused by the meds basically they don’t work maybe that’s why they always reply to me , but as said already the NHS is in such a state you have to chase these things yourself unfortunately . Good luck 🤞

[OSTEOARTHRITISRA]

Hi im 12 months but the last time I had to kick up a wee fuss ,always been 6.9 12 months bit lucky there ,it is becoming disgracefull for some now like yourself, if you contact pals or make complaint ,you will get seen it seems ,also feel sorry for all those waiting upto 3 years for an operation ,on list and lots Severe

[cyberbarn]

Please do contact PALS. I was in a meeting with the head of patient engagement recently about something completely different but I took the opportunity to mention rheumatology. She said they were aware, but they also need to have the patients come forward about it because it gives them more evidence that there is a problem.

PALS might not be able to sort things out for you if there isn't enough rheumatologists, but they need to know that these shortages or disorganisation is affecting patients.

[Bailybiscuit]

Yes I was being g seen 6 monthly but now it seems not even once a tear unless I ask for appointment and keep being a pest. Last year I was offered an appointment and he was running late.I was rushed through and he didn't listen. This year I didn't learn and accepted an appointment that was the last of the morning. He actually told me he hadn't got time to inject my knees and that I was unlucky to be the last patient. I will never accept a late morning appointment again as he had to be out of hid room for someone else to go in.

[Sebastian247]

I waited 18 months previously (instead of the planned 12) and word is that long waits and overdue appointments are common at my rheumy dept. I can't add anything more to the advice already offered, but it is a depressing situation. I don't think it unreasonable for every RA sufferer to have a FTF appointment once a year, if they want it. That seems a pretty low bar. Hoping this gets resolved for you quickly. Seb

[itwasntmeofficer]

I know of patients who haven't been seen since pre-COVID pandemic - 4 years or. I would say, though, that the "bulging discs" and trochanteric bursitis are not really problems that need to be dealt with by your rheumatologist - primary care MSK services would be your best bet - In ost areas, patients can refer themselves.....

[AgedCrone]

If you take a look at the almighty muddle the NHS app shows the service is in you will get some idea of the problems the clinical staff have in doing their jobs as they would like to do…especially regarding regular appointments.

If the staff aren’t there to follow up the rheumy team’s promises to allot an appointment …..things will drift as you have found..& the more new patients who are referred to rheumatology……unfortunately things will continue to be unsatisfactory. Do continue to try to contact your rheumy team..maybe write a letter to the head of the rheumy dept?

Sorry I can’t be more optimistic…but I think it will be a long time before some area health authorities will be able to improve.