What is a reasonable amount of time to wait for an initial rheumatology appointment when you have joint swelling and high rheumatoid factor?

[Katt]

How long did you have to wait for your initial hospital appointment after the GP had referred you?

[Hidden]

My first appointment was with in two week I find I have up to six weeks to wait from seeing doctor to the nurses appointment 

[medway-lady]

GP referred same day but seen privately same week, tests done and X-ray carried out. Because private I suppose a lengthy consultation and medication started. Then  seen by NHS great treatment again. I can honestly say I've had good treatment all through the journey of RA. It was not an easy journey but now I feel great no joint pain or swelling. So if your diagnosis is recent do not  be disheartened for a great many patients the medications are very good and work well its just a nuisance finding out which one or ones work for you.

[helixhelix]

The NHS guidelines are 12 weeks now I believe, and for early rheumatoid arthritis there's a recommendation that it should be 6 weeks.  But of course these are just guidelines.   My hospital is overloaded, so I think my first appointment was 7 weeks.  Even so, in those few weeks between my GP finally recognising that it was more than osteoarthritis & the appointment, my RA went totally bonkers.

[Katt]

Thanks for your replies. It has so far been 9 weeks since my GP did the referral and not heard anything yet and my pain is getting worse in more and more joints. Maybe I should phone them??

[Fennella02 in reply to Katt]

Ring the rheumatology secretary.  People slip through the net all the time.  

[earthwitch in reply to Katt]

yes, I'd definitely phone the rheumatology secretary, and maybe also let the GP know that you are still waiting.  They may want to chase it up.

[kalel in reply to Katt]

Katt call them and explain to them what is going on and see what has happened.  I know for my last nhs referral they never received the letter sent by my gp and I was seen two weeks later after I called to chase everything up.  Good luck with everything.

[orchidcass77]

Mine was the day I went to GP, she sent me straight to hospital, my case was extreme though and I had severe swelling. I was so broken, finding out it was RA, was simultaneously an ahhahh moment and one of true sadness, that I knew this would be bad, and I knew that everything about my nan that I remembered was because of the RA, that she had to have been suffering as much as I had

[nomoreheels]

A day over a fortnight. That's unfair actually because I was living abroad at the time & it was a diagnostic clinic where within 4 hours all my tests, examinations & imaging, all your Rheumy will do to determine what you have, were done before my first Specialist Consultant appointment. It meant I was prescribed & I'd been on all my meds for the three months leading up to my initial meeting with my Consultant but I do think in my case it helped. It wasn't private, this was with the free state health care SIP card which working residents were allocated.

[JacquiThomas999]

I was told on a Thursday that my GP had done an urgent referral. Saw her the next following Wednesday, hospital rang the same day, got a cancellation for the next day. I was lucky.

[flow4]

I think I waited 6 weeks. Up to 12 is normal. You can ask your GP to 'expedite' the referral if s/he thinks you need to be seen more urgently, by writing to the consultant again explaining why.

[Hidden]

I was diagnosed 2012. From going to my GP to seeing rheumatologist was 6mths. Makes my blood boil just thinking about it!

[Amhoarten]

From getting blood results to being referred was almost 6 wks exactly.  Have to say on seeing the rheumatologist to being diagnosed was another 3 wks as he wanted more bloods done.   I was puffed up like a balloon and in agony so gave me a steroid jab which worked like magic.  So that following three week appointment I was diagnosed and sent away with medications and loads of leaflets.  That was four weeks ago.  Still not sunk in.  Hope you get yours through nice and quickly.  

[Cagsie]

My GP phoned the hospital and I was seen in four days, excellent service. I would definitely phoned the rheumatology secretary at you local hospital. Good luck x

[DelicateInput]

I am surprised because they are not supposed to do that.  If you see them privately, then you are supposed to get an NHS referral to be seen on the NHS and also to wait the normal time.

[nomoreheels in reply to DelicateInput]

I think that's only necessary if the Rheumy who's seen privately doesn't treat on the NHS. It doesn't happen often nowadays as fewer Specialists only treat privately. So if the Rheumy who was seen privately also intends to treat you on the NHS a referral shouldn't necessary. My experience wasn't for Rheumatology but I've seen a Specialist of my choosing initially for a private consultation who performed an exploratory op at the private hospital & then I was transferred to be treated by him on the NHS the following month.

[Fennella02 in reply to nomoreheels]

I did the same with respiratory and ENT - at the recommendation of both Consultants.

[DelicateInput in reply to nomoreheels]

No, it is NHS regulations that you have to have a referral letter sent direct to the NHS consultant and then wait your turn.

I saw a chest specialist privately in 2003, not because I wanted to but because the GP kept pressing to refer me and then when I agreed he asked if I had private medical insurance and pressed me to pay privately.  I then recalled that I had a Saturday Fund type of health insurance which usually covers dental and alternative practitioners like osteopaths, podiatrists, physios etc, but it did cover just one consultant appt.

The consultant wanted to do a bronchoscopy so I asked if I could have it on the NHS.  She said I would have to get a referral letter addressed to her at the NHS hospital where she worked.  I waited nine months for an appt which was the standard waiting time.  Doctors can be in serious trouble for the type of queue jumping you describe.  Needless to say, I was offered no treatment on the NHS.

[Fennella02 in reply to DelicateInput]

Yes, I think this protocol is entirely correct.  My NHs resp referral went to the Nuffield by mistake.  I attended the appt and was given the choice of having the investigations on the NHS or privately.  ENT was an NHS referral but I went to the nuffield then followed it at the Consultant's suggestion with the original NHS appt.

[nomoreheels in reply to DelicateInput]

So in essence what you're saying is if you choose to see a Specialist privately in order to receive a diagnosis & he suggests the treatment he is able to give can continue on the NHS he has to write a referral letter to himself in order to continue treatment on the NHS.

The queue jumping as you refer to it was suggested by my GP. Ordinarily I would not have chosen to be seen privately for an initial consultation but the Specialist I was under at my local NHS hospital delayed treatment by a year (lost my records) & my age determined that it was necessary having lost a year that I was seen on an urgent basis hence the suggestion of the need to be seen privately. Another huge boo boo was made by one of his Registrars at the same hospital so I chose to be seen outside my local health authority as understandably I had lost faith in mine. My continued care was with him within his health authority, no referral letter was needed, I was just transferred to the hospital where he saw his NHS patients.

[DelicateInput in reply to nomoreheels]

As explained, when I saw a chest consultant privately (not from choice but pushed by the GP and the referral was his suggestion, not mine), the consultant would not entertain transferring me to her NHS hospital.  She said the GP would have to write a referral letter.  That is what they are supposed to do to stop people "queue jumping".  I suspect she could have sent me an NHS appt in less than nine months, but it was quite clear that they just wanted me to pay.  I never got any treatment on the NHS or privately and still have the problem.  I was just discharged without any treatment - the attitude being pay up or put up.

I saw a rheumatologist privately, after a two month wait and no sign of an NHS appt (as the hospital said they had not even received the GP's referral letter).  He had retired from the NHS so there was no possibility I could have seen him on the NHS.  He said most people in my condition would have gone to A&E but he diagnosed gout, which I did not have, without doing any tests at all.

I just think all this nonsense of referral letters is a delaying tactic.  The hospital had not received the letter because the GP had not only faxed it to a non-existent number but had got the consultant's name wrong.  I had to search the internet to find the name of a consultant myself because the GP did not have time - all without the use of my hands - and phone the surgery with the information but they still could not get it right, deliberately in my opinion.  The referral letter was itself a work of fiction and I did not recognise the history or the symptoms.  The GP could have done some tests such x-rays or ultrasound but refused. 

It just proves that people are not seen in turn, as they are supposed to be, but rather on what the GP says and in many cases that is entirely inaccurate.  The whole system is unfair, in my opinion.

[nomoreheels in reply to DelicateInput]

Ah, that's where we differ. I made sure it would be him I would be under (& his team) on the NHS before I made the initial private appointment. I agreed to pay for the exploratory op privately & dependent on the findings of that then transferred to the NHS as my body determined so that was the next month. Only when all his treatments he was qualified to offer failed was I referred, by him, to another Specialist for the next step of treatment at the main centre in my area, (Specialist care hospital) for further treatment, still on the NHS, not that it was particularly close, 4 hours in rush hour traffic to be there for 8.30am each time! This is why I understand referral is only necessary if it's to another Specialist not the one you've seen privately in order to transfer from private to NHS.

It does sound as though you've had a rough ride, not to mention an inadequate GP Surgery, unless it is just the one GP who was at fault. Seems to me you need to either change GP & see if he can fulfil your request properly or find a Consultant yourself, but do check that you will continue to be seen on the NHS by whoever you choose, if you're in so position to do so, they don't come cheap do they if you're paying out of your own pocket.

[DelicateInput in reply to nomoreheels]

It was obvious from the GP surgery that they did not want to refer me on the NHS.  I was fully prepared to pay privately for any investigations and treatment which for RA, which the GP actually said I had, is not expensive compared with some medical conditions.  It was not at the stage where I had joint damage though I think I do now because of their messing around.

Yet, all he wanted to do was mess around.  He said it was gout and also an upper back problem and tried to send me to his private gym which had physios.  I saw my own physio who told me to get another opinion and that I was the oddest gout patient she had ever met.  She said it was RA.  She actually suggested acupuncture and tried something similar called needling.

I had already spent quite a bit by then - not that I minded if I had received effective treatment and diagnosis - but I was getting nowhere.  He did not seem to understand that the reason I was paying and not waiting for the NHS was that I could not work and I was losing a lot of money.  By delaying matters the way he did, I would not be able to pay unless I could get back to work.

I saw an NHS rheumatologist who did do the tests I was expecting the private one to do but it was nine months before I could move my hands and that was because I had electro acupuncture and then chinese herbal medicine - and that did not come cheap.

I did have a cortisone injection in my shoulder which helped a lot but it only lasted about ten weeks.

I don't trust Western medicine or doctors, I am afraid.  There are no side effects from the Chinese medicine and a good many helpful effects on the body (illustrated by improved blood results) generally.

I do need to find another GP - I saw all of them in the practice and all they were interested in was money.  They must know that RA is chronic and not really covered by private medical insurance - and it hardly uses up a lot of NHS facilities (blood tests, ultrasound, MRI at the most, etc).  They are just too mean and crooked for words.

[nomoreheels in reply to DelicateInput]

Unbelievable! What sort of set up is that? I'm amazed they have any patients at all, I guess nobody's bothered reporting them. Or maybe they're under threat of closure due to the MPIG & their funding is in jeopardy of being lost. I have read that some Practices are shall we say boosting their revenue by being offered & taking up large financial "incentives" to not refer to NHS hospitals, maybe something in that with yours & the private focus? I'd be changing, quick sticks, they certainly don't seem to be working in their patient's best interests.

[DelicateInput]

I waited six months for a rheumatology appt ont he NHS, despite very severe symptoms like not being able to use my right hand (fingers jammed) then left hand, then right shoulder, followed by pains in my knees.  I did see a rheumatologist privately (which was what the GP wanted so it does not come off their budget) but he did not do any tests and said it was gout.  When I went back a second time, he could not remember seeing me and only then thought about doing an x-ray but no mention of ultrasound.

When I eventually got an NHS appt, I got ultrasound done on hands and shoulder and knee pretty quickly plus x-rays which showed synovial thickening, fluid on wrists, effusions.  An MRI scan another six months later confirmed this but, funnily enough, showed an improvement.  I had been taking chinese herbal medicine and electro acupuncture.  I finally got the diagnosis on an improved condition.

The rheumatologist was not too happy about the GP's referral - the letter was entirely misleading and implied clearly that I had osteoarthritis or it was all in the mind.  The GP patently refused to try and get me an appt earlier than six months, yet when I got to the hospital there were people who had nothing visibly wrong and had only waited a week.

[Karen77]

I feel like you should be asking what's typical, rather than what is reasonable. I'm in Ottawa, Canada, so results may not be typical. I thankfully got my first appointment within 3 weeks of diagnosis, but was told it was because my GP said I needed to be seen "urgently." My first rheumy retired in Sept 2013 (i started with him in Jan 2012) and I had to wait 6 months to see my new rheumy. I don't like this one (she can't read her notes or keep track of my history) and had a referral made to a new rheumy in Sept 2014. I finally have my first appointment with this new doctor coming up this month - over 19 months since the referral was made! It's a good thing I've at least got someone to go to in the meanwhile!

Cheers!

[Audyk56]

In Northern Ireland it is 51 weeks.

[Hobnobbing in reply to Audyk56]

Also in NI. Can't fault the doctors. System is well and truly broken. Maybe if a sick person was running our NHS there would be more understanding and a greater effort to fix things. Appalling. 

[DelicateInput in reply to Audyk56]

There is no point in going if you have to wait that long because the drugs apparently don't work then.

[wishbone]

I was diagnosed in 2003..give or take a year. My GP told me that I would have to wait around 18 months to see a rheumatologist.  I was surprised, but not too bothered, by how long I would have to wait as my symptoms weren't too bad at the time - just pain in feet and knees when I walked any distance. Can't recall how long exactly, probably a couple of months later, I flared badly with serious pain in many joints. Informed my GP and was seen by a rheumatologist  a few weeks later.

[Katt]

Well I called the hospital today and they have no record of a referral, so phoned GP surgery and they said they would look into it but heard nothing back from them yet. Can't believe I have literally been waiting for 9 weeks and I'm not even in the system. Really worried as joints getting worse by the day. Thanks to those who recommended that I call the hospital as I could have still been waiting without knowing that nothing was going to happen. Feel pretty down about it all as I feel as if the Dr's are not taking me seriously. Sorry if this all sounds negative but I'm really worried and in pain.