Hi everyone. I am as yet undiagnosed And waiting for my rheumatology appointment to come through.
I have been waiting eight weeks just to receive a letter for an appointment . Is this normal? It feels like a long time just to wait for a letter. I am then expecting another six months before I actually see a rheumatologist... In everyone’s experience, Should I be chasing my GP yet?
Hello abt84
That doesn't sound unusual to me. My experience is that the first call to make might best be to the rheumatology department itself. They will know exactly how long the waiting time is at the moment and you can also ask them of any ways to speed things up. A GP may send a request to make you "urgent", but the reality is that things have to be pretty dire before this is acted on.
One option you might need to consider is to see if one of the consultants your rheumy dept offers private assessment; the waiting times for these are usually negligible and s/he might then accept you onto their NHS caseload.
Good luck anyway
Thanks for your reply. My problem is that don’t even know which rheumatology department I am being referred to. So I can’t call them!
My GP put the referral in 8 weeks ago and I have heard nothing from anyone! Should I be chasing to get my appointment letter?!
I have not even received a letter for an appointment. I think i’ll Feel a little less anxious once I have an appointment in place. But my referral was put in 8 weeks ago and still no letter to tell me if/when I have an appointment. I just wondered whether this was normal!
When I was referred to Rheumatology I was told there was a 12 week waiting list at my particular hospital. So it sounds about right. (Fortunately I was seen in 2 weeks for some reason which was quite a shock! - Possibly because my GP already took loads of relevant bloods and the results were worrying)
Hopefully you don't have to wait much longer but if there is some way of you digging around I'd suggest trying that. Nothing worse than waiting.
I would contact your gp surgery first, make sure the referral has been done first. If you get confirmation then I would contact the nhs referral helpline.
I would of thought you would have at least received a letter by now offering you the hospitals you can go too.
X
I’ve been seeing the rumi dr at hospital for nearly 3 yrs and I’m ment to get a 3month app but tends to ve 6to 8 month!
Sorry sent befor I’d finished I blame the fatigue so a long wait is unfortunately normal although the rumi nurses are terrific I ring them they get back to me generally the same day
Definitely chase your GPs. Sometimes these referrals go missing or get lost in a secretary’s to do list...
It may be a few month wait anyway but you don’t want to add to that wait due to admin errors.
If you feel really poorly and feel like this is too long, you have a few choices -
1- go privately (just a one off) but make sure the one you’re seeing has an NHS list too and speak to the secretary first and see if they transfer patients to that list (I did this and got transferred for all tests etc and then was on his NHS list quickly)
2. Ask your GP to contact the department you’re referrred to and hurry them up or contact them yourself. If it’s close and you feel well enough I have found a personal visit often works better as once they’ve seen you they be more likely to squeeze you in or put you down for a cancellation
3. If it gets really bad, your organs are affected and/ or you’re in any danger health wise then there’s always A&E. You’ll then see someone and be quickly followed up if you’re very poorly.
Hope you get somewhere quickly. It’s miserable waiting if you feel ill and are desperate for diagnosis/ treatment/ help
X
Unfortunately unless you are in crippling pain & your GP considers you are an emergency ....(depending on your post code)! It can be a very long wait as there is a serious shortage of Rheumatology Consultants in the UK.
Speak to your GP & see if he can hurry things along....or in the meantime prescribe something to help.
Once you are offered a rheumatology appointment, if it's months away, telephone the department & ask if the have a cancellation list where you might get pushed up the queue if you can attend at very short notice.
Good Luck.....Hope you are seen soon.
Hi, it took 8 months for me to get my appointment (which was a month after receiving the letter), but I had a letter confirming they'd received my referral about 2 weeks after my GP had sent the referral from my health board.
If you've not had a confirmatory letter, try chasing up your GP about that, and check what type of referral you've been put on.
An urgent referral gets seen in less than 18 weeks, and a 'routine' probably after 18 weeks. Those aren't the NHS targets, but from observation, NHS targets seem impossible to reach so aren't followed strictly.
Other than chasing up your GP, I don't have much other advice. Hope you hear soon!
Hi
It took me over 8 months to actually get an appointment but started treatment within 2 weeks of seeing specialist...
Xxx
I went private when I was 18, they basically said it would take up to 6 months to even get seen, it was £200 to just see the consultant that’s going back 10 years lol, but after that I was put on the NHS and was free, if i wasn’t to see him privately I could pay or just wait for the NHS appointment, this really speeds up things and puts u at the front
Thanks for all your replies!
It sounds like there are loads of different experiences depending on how bad your symptoms are and also where you live!
I have called my GP surgery. Who then told me to call the Barnet hospital referral team. Who then couldn’t find my referral so told me to call my GP again to re-do my referral - it went ‘missing’ - bloody annoying and glad I chased.
Thanks for all the advice!
Hello. Welcome to NHS and years of waiting! I wish someone had told me in my early days that the diagnosis and treatment process would take years. I waited nine weeks for first Rheum referral in 2014 which was acceptable. But currently I am at thirty weeks for an eight week review labelled “MUST BE SEEN”. I won’t be seen until thirty two weeks. I tried contacting outpatients admin managers, consultant secretary managers , appointments managers. Patients wait for referrals, wait for diagnosis, wait for treatment, wait for prescriptions, wait for drug dispensary, wait for reviews, wait for bloods and wait for good days. My best advice is learn to relax and de stress with mindfulness techniques, get a good book on kindle and educate via Lupus UK site who have great info on everything. Over the years my expectations of timely service provision caused me additional anxiety. Start a good rapport with your GP and get on top of pain or other symptoms until you are seen. You hopefully have a Rheum specialist nurse helpline to contact once you are seen. Hope you don’t wait too long this time.
Second wave of NHS letters?
Fat I’ll waiting for a diagnosis 
Waiting
Waiting for New Referral (New rash)
