How long should I be waiting for my first rheumatologist appointment

[Nildesperandum]

I have had nasty flare ups in shoulders, knees, neck, wrists over the last six months, at the moment my hands are very sore and some of the tendons are pulling, and so are my feet and ankles. I have general aches in shoulders and knees. My GP diagnosed ra last weds after a strongly positive anti CCP test. I am worried as I have just had my appointment through and it isn't till July 2nd. I am not on any steroids yet, just ibuprofen. What do I do? Is that standard? Or do I need to try and go back to my GP in the meantime. Or should I pay and try and go earlier? I need advice please. Thank you. X

[Hidden]

uum its up to youfirst appointment! it took from july to nov in my trust!! got desperate paid for an interim private appoint in oct... four / five months is sadly normal in my area. even for first referrals and and urgent appointments!!!. you are south of me and covered by bristol and north avon nhs trust??. sounds no better?.x.

There is a private chap from wilts( neighbouring county to you and me that does private consults at £190?..

From comments on here oxford is the bees knees, but goegraphically difficult for you? x

[Mumoftwin17]

Ahhhh know how you feel...I'm in the same boat.....But I come under Dartford and Medway Trusts...I read somewhere my area is up to 10 month wait!!!

Not really acceptable is it?

Hope you hear soon

Wendy

[helixhelix]

The NICE guidelines are 6 weeks! But I don't think that happens very often... What you can do that works sometimes is look on the appointment letter for the phone number of the bookings bit, and call them to see if they might have an earlier cancellation, and if you explain the position they might try to find one. You can also ask your GP to exert a bit of pressure to hurry things along, and also ask if they'd give you a better NSAID than ibuprofen. It does work fine for me, but some people find that others are more effective for them. You could also ask your GP for a short course of steroids, but you need to keep an eye on not masking all the symptoms for your rheumy appointment (when it happens!) as it's better if they can see you at your swollen worst. So it's a balancing act between keeping comfortable and having something to show. Do also start a diary of symptoms/pain levels and maybe take a few photos of joints if they come & go. Polly

[Hidden]

Hi there, anyone with suspected RA should be referred to a Rheumatologist very quickly. I think there are some NICE guidelines that specify a recommended time frame from consulting a GP to getting a Rheumatology appointment. But I've been searching & can't find it.

However NICE do strongly recommend an urgent Rheumy appointment for anyone who has had a delay of more than 3 months between onset of symptoms and seeing a GP which would seem to apply to you as your GP has only just decided to refer you. This is the link:

nice.org.uk/usingguidance/r...

The thinking is that the sooner treatment begins the less likely patients are to sustain joint damage - sounds like you know that already. Unfortunately there is such a disparity between recommendations - even strong ones - and the reality. But with the guidelines on your side you could (& should in my view) push really hard to get this appointment brought forward. They can do that & they do do that.

If that fails then see a private Rheumatologist if you can - preferably someone who comes highly recommended & has links with the NHS locally so that any treatment plan can be instigated easily.

Good luck & don't be fobbed off!

Luce x

[lynn-bel]

Hi

As above, dont be fobbed off. My GP referred me in the March and got an August appt in RA dept. !! Then they wrote to me to cancel that one and reschedule in December!!! (this was in 2000). I pleaded with my GP as I was in so much pain and had a holiday set for Sept. and he faxed the hospital asking for an emergency appt. and I got to see the RA cons. in the Aug. who confirmed RA and then I was given steroid shot to see me through until they sorted out my meds. That helped enormously and I was able to go on my Calif. holiday.

Treatment should be started as soon as poss. but it all depends on how many people in your area are waiting for appts. and the waiting time IS getting better.

If you are strugglign, go to your GP to ask for somethign to tide you over! The steroid intramuscular that I had saw me through 6 weeks and was a lifesaver.

As suggested, contact the hosp. to see if any cancellations but experience tells me you may have to wait. My GP didnt diagnose RA, he just thought it was that, the RA cons. did my testing. Go private if you can, but as Luce says, check out the best one in your area - my neighbour saw a private one who turned out to be same as mine on the NHS - but of course she had more frequent visits by going private.

Best of luck

xx

[Hidden]

Hi

That does seem a fairly long time...are you going to the BRI or Southmead? I waited about 9 weeks for my first referral.

I know of someone who didn't have to wait that long to been seen at the BRI, maybe worth checking if you can get a cancellation?!!

Good luck

Maddie

[Nildesperandum in reply to Hidden]

I just rang to get a private initial consultation with a consultant who does private and nhs. So once I have seen him and he has kicked things off he can transfer me to south mead. After reading everyone's advice I decided it would be worth it not to wait any longer as my hands hurt so much. So this will be on 14 may. So that's better. I am rather fed up x Sally

[Hidden]

I had to wait a long time for a diagnosis - 9 months from referral although I did see the consultant after a 4 month wait - and because of that long wait my GP put me on Sulphasalazine (a DMARD). But unfortunately it didn't agree with me so i then had a IM injection of steroid and this did unfortunately mask the symtpoms of swelling so I then had to wait a further 4 months for a diagnosis and treatment.

One thing I should say is that it's really good that your GP has run an anti-CCP test because most GPs only take rheumatoid factor and that's not usually enough for a diagnosis - so then you have to wait for that test result after your consultation - and it's not a quick test to get back either - took months for mine. So it sounds as if you should ask your GP to push hard for you and phone the hospital and ask for a last minute cancellation too as others have suggested.

Good luck. Tilda x

[Hidden]

Hi Sally

I couldn't get the reply link to work!

You're bound to be fed up especially as your GP has diagnosed RA...you need to see a specialist now to get your treatment sorted and that's sooner rather than later....I went to my GP whilst waiting for my appointment as I needed stronger pain relief and she prescribed Naproxen which helped until my appointment arrived and still is

I was given the choice between BRI, Frenchay or Southmead, I chose Southmead as I think they had the next available appointment but it was about a 9 week wait. I was only diagnosed in Feb but my first experience of itthere was fine..hope it continues! If I can be of any more help, please don't hesitate to contact me.

Good luck with everything and with your appointment..not too long to wait now

Maddie x

[Nildesperandum in reply to Hidden]

Thanks Maddie. That's good that your experience of aouthmead was positive x z

[earthwitch]

Best way to check what the wait list targets are in your area is through PALS. Be warned though, even if they do have target times for referral, they don't have to meet that 100%. I think some regions still have 18 week targets, others are down to 12 (that includes most of Scotland), and some do 6 weeks for RA.

[shirlthegirl]

I'm sorry you had to join this site, but it is the best thing you have done with trying to deal with RA, I was like you i started having my problems in June last year, i was diagnosed by my GP on the 10th September but i never had a appointment until 14th November, i was told this was very good considering the amount of time some people had to wait, Over a period of 3 months i was having flares in nearly every joint, it is very frighten, but there was no problems with my joints, That seems to be a long time to wait to be diagnosed by your GP, i would of thought they should of picked something up before that, I really hope you get things sorted out soon, I have made some great friends on here and have been given some great advice which has really helped me, take care XX

[Dotty7]

I'm pleased you have got an earlier appointment, though it's ridiculous that so many of us have ended up paying for the first consultation. Meanwhile your GP can give you stronger painkillers than ibuprofen, so keep going back and badgering for them.

Good luck,

Dotty xx