Waiting times

[lizzy1976]

Not that this is of any great benefit to me lol but I wanted to know what amount of time you all waited to see an nhs rheumatologist and whereabouts you are in the UK? Just thought it would be interesting to hear the different results... if that much of a difference x

[whisperit]

Here in South Wales, I was referred by a consultant cardiologist. The waiting list time was said to be about 6 months. Since I had by then already been off work for about 5 months, I cheated and saw him privately a week later x

[eekt]

Two months here in the south of Scotland...at a small rural general with one rheumatologist inexperienced in SLE

Thanks for a great question! xxx

[Hidden]

In the south west, our local hospital has a number to call. If urgent they see u the same day or the next day. Booking appointments is easy and regular six monthly appointments are well managed. Great service, even had a need to have them visit my wife in the hospital when recovering from life saving surgery to check her and her medication and ensure her treatment team understood the implications of her lupus. Regards

[Hidden]

I’ve been under 3 hospitals under 3 different NHS boards in East Scotland. My first referral was in 2011 and I had to wait 4 months to be seen, another 4 months to get diagnosed with RA, put on Methotrexate and then 8 months until seen again.

Second hospital seemed to be 6 monthly but there was a nurse helpline and I could leave a message - but they only expedited appointments if bloods were showing extra bad.

Third hospital/ health board - first referral seen by registrar within 3 months, then rediagnosed with Sjögren’s plus CTD? Then seen 4 monthly until very recently when I’m being told nothing they can do for primary Sjögren’s patients with no overlapping CTD so will be discharged back to primary care - although got another appointment on pleading - in 7 months.

My GP has protested on my behalf (and hers!).There is no follow up disease activity monitoring unless you’re on meds - which I’m not now.

[nurselulu]

6 months in Berkshire. I was i remission for years and new something was very wrong. Couldn’t breathe, exhausted, couldn’t walk even a short distance and I was working. Gp refused to do the bloods saying they need to know what to look for (absolute rubbish). Then went to see another GP, who did the bloods which all showed a flareup and was referred. By the time I saw the consultant, I was feeling much better...

[MEGS53]

About 2 months in NE England, but I was referred by another consultant. My GP says it would have been much longer if he had referred me.

[Roarah]

I am in the US. My rheumatologist of choice, knows APS and is a md/ Ph.D., was a two month wait with a referral from my hemotologist, also a APS specialist. The Hemotologist would have taken six months to see, I could have seen another guy much sooner, but my neurologist insisted I take the first available appointment with only the APS specialist and he in the meantime " reached out" to the hemo to see what we could do inbetween and suddenly the hemotologist's secretary called me and I had an appointment the next day. Even with private health care the good doctors in my area, I am near Yale university a very renown medical institution in Connecticut, there are long waits to see good specialists unless the referring doctor thinks you are a priority case.

[C-aches]

Hi Lizzy, I was referred by an NHS Neurologist (presented with bizarre neurological symptoms) to Rheumatology due to high ANA and very high anti dsDNA. Was given no idea of waiting times, freaked out a bit after waiting 2 months (feeling truly unwell) with no contact at all. Saw (privately!) an excellent Rheumy at a centre of excellence for Lupus within a week of requesting an appointment, and was diagnosed and started on treatment within 2 weeks! She advised me to see the NHS Rheumy when the appointment came through, which I did. The wait from being referred by the Neuro to being seen NHS route was 6 months! Good luck to you.

[lizzy1976]

So interesting the difference in different areas! The waiting list for the Northern Trust area was 18 months for me, I went private in between because I was so sick, used all my savings to go private, consultant was lovely. Finally got nhs appointment through and he was so rude, he was passing comments about private consultants.. only for my benefit of course because private rheumatologist wrote to him, said “ I will have to repeat all these bloods anyway “ I was fuming 😤 because little did he know I was so desperate and now broke! He put me on methotrexate and I was on and off it but couldn’t cope with the sickness and all it did was clear my skin up. Last appointment was April and he was his usual unpleasant self, said my bloods don’t show I need anything else that any other drug would make me feel the same and wouldn’t work, said there is nothing wrong with my bloods, snapped my file closed, I said I’d this it? I’m feeling so sick... he said yup, I’ll not take you off my list but that’s it for now. So I’m on no medication and feeling very very sick now. I’m waiting for a second opinion with a rheumatologist in Belfast, don’t know how long I will have to wait to see him, hoping it’s not another 18 months ☹️

[Cas70]

Hi - in Surrey my first appointment with Rheumy took 3 months , my follow up one is Today - 6 months later ! I was told to see her in March but when I called I was told I was “moving up the list” - I have all but given up with NHS appointments. I had blood tests in early November so what relevance do they have now 6 months later ?

[SRiley]

I’m in the North West of England. I was referred by neurology to rheumatology while I was in hospital. My initial appointment took 2 months to come through. The rheumatologist was lovely and said he’d see me again in 6 months but I have actually received an appointment for 4 months.

Interesting how different waiting times are across the country...seems so unfair that some people have to wait ages for their initial appointment!