Is this normal?

After visiting my GP following a diagnosis of RA. He drafted a letter to the local Rheumatology department at Hillingdon Hospital. That was two weeks ago and I haven't heard anything. So I phoned the hospital and they phoned back to say thay haven't recieved any referral from my GP! I phoned my GP and was told the referral went out the next day?!? The GP's office said that they would fax it too the hospital again. I had to find the fax number for them as well!

I have heard lots of tales about files being lost or going astray. Is this the beginning of one of those frustrating episodes when everyone says that it is someone elses fault and the only one who really suffers is me as I have to wait even longer for my treatment to start. Apparently the Rheumatoligy department has an 18 week policy, i.e. I should be seen within 18 weeks. I am kinda assuming that this is normal?

I also have to say that the rheumatology dept was very friendly and helpful.

Regards

Richard

5 Replies

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  • Hi

    and yes. Get your gp to mark it urgent and you will be seen in a month. You need the rheumy consultant to verify it's ra, so expect to spend the whole day there doing bloods, xray's etc. You need to speak to the dept that takes in new referrals, its them that will pick up your fax and pass it onto rheumy team or make the initial appt.

    Once in system you won't have this problem again. Note it worhth trying a couple of hospitals in the area and then go with the one that offers you the quickest appt, if you have a central booking area that is!

    Good luck and yes you need patience.

    Sci x

  • And if you're in England (I know Hillingdon in London, but could be others...) the NICE guidelines say that your first appt should be in 6 weeks, not 18!

    Unfortunately there does seem to be a big trend of the patient needing to work hard to keep things on track, so lots of us have had to learn to be politely pushy. So phone hosp back to check they've got the fax, and ask if they have an early arthritis clinic that sees people quicker, and try to keep on checking progress. Polly

  • Yes it's normal Richard but it's not right! Did your GP diagnose you with RA because although that will get you referred it's not actually a diagnosis I'm afraid. A rheumatologist as to diagnose you and decide what treatment you need if he or she says it is RA. Some on here have still not got a proper diagnosis despite their GPs being sure they have RA. So you might just be at the start of a long and weary making journey Richard - I am some way in but still not getting treated as the guidelines say I should be.

    It's all very hard work in my experience and you end up a bit of an expert on all things NHS and rheumatology! But perhaps once the letter has been read and absorbed you will be fast-tracked through as the UK wide NHS policy is to fast track first time referrals - then if you're anything like me you will have to fight tooth and nail for follow up reviews and care because of all the newer referrals coming through and taking priority.

    But here's hoping that's just my situation in my area - and not worth worrying about for you yet. Please pester and pester until you get the referral acknowledged and keep us up to date on how you get on. TTx

  • Hi, my journey started over a year ago. It started with what was diagnosed as puesdo-gout. I then developed a lump on the underneath of my foot near the ball joint. After x-rays, ultrasounds, MRI and visit to orthapedic specialist I was sent back to my GP with a suggestion that I was referred to a rheumatologist. Having spent nearly a year with this problem I went to a private rheumy and he diagnosed RA. Apparently I have a CRP of 7 mg/l and Anti-CCP at 311 IU/l. Still not sure what this means but diagnosed as RA - Anti-CCP positive.

    Unfortunately private rheumy could only diagnose and sent me back to GP for referral to local hospital. Now waiting for 1st appointment.

    Richard

  • Ah that explains why you are so clear that this is a diagnosis of RA Richard I see where you are coming from now - sorry to query! Not sure why private rheumy couldn't direct your GP about what to prescribe you with while you wait for your place on the NHS list though? My GP thought I had RA and put me on Sulphasalizine why I waited 4 months to see the rheumy. Unfortunately I had a bad reaction to the Sulpha drug though and he then gave me a steroid shot which ended up masking the symptoms when I finally did get to see the rheumy! Nothing seems to happen at all fast in the world of rheumatology I'm afraid.

    But I would ask your GP if he or she could at least speak to the rheumatology dept about possibly treatment in the interim as there are DMARDs that are less toxic than others if it seems you are in for a long wait? The anti CCP is a more specific test than the Rheumatoid Factor test - so as yours is very loud positive that may well indicate that this is RA. I did read somewhere that the test also reads positive for Palendromic Rheumatism though. My anti-CCP was negative and RF positive so the rheumy said that means mine is sero negative RA. Your CRP is an inflammatory marker that tells how inflamed you are on the day. It's only relevant to the moment in time it was taken and can rise and fall very rapidly. Your reading sounds pretty low to me but then I'm no expert! The ESR is the other inflammation marker and that shows recent inflammatory history and goes up for other things such as viral infection which compromises it's usefulness - but it is the one mainly used in my care anyway. TTx

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