How long to get letter from rheumy after appointments?

Hello,

I am quite new here (2nd post!). I had my 2nd rheumatologist appointment 3 weeks ago but still haven't had any paperwork through in the post. Is this normal? He tentatively diagnosed me with sero negative RA but said there were some pointers to PsA so said he would schedule a bone scan to look at the pattern of inflammation, plus would get the rheumatology nurse to call me to arrange an appointment to talk about starting methotrexate (am currently in hydroxychloroquine) and a chest x-ray. I've not heard anything and not had the letter summarising the appointment either. Is this normal & just reflecting the state of the NHS at the moment, or could something have got lost somewhere? I have no way of contacting his secretary since I this is the first time I've seen this rheumatologist and don't have contact info.

Thanks

23 Replies

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  • Did the hospital give you the phone number for your rhumatolagist nurse phone and tell them I am waiting for mine been 5 weeks now I am with Barnsley hospital

  • No, that's one of the things I'm waiting for. She was supposed to be calling me (apparently).

    5 weeks is terrible!

  • Things tend to be slow I have to go to another hospital to get a second apinion and still waiting for appointment then that could be a long wait !

  • The consultant should send letter to your GP, so ask your GP's surgery if it has arrived and if so can you have a copy. In my experience it can take up to 6 weeks for the letter to arrive.

    And f you call the hospital switchboard they should be able to give you the number for the rheumatologist's secretary or the nurses.

  • That's a great tip about checking with the dr if they've recieved the letter. Will leave it a bit and then do that. Thanks.

  • Same here as Helixhelix said 6 weeks is about right.

  • I was told I had the most aggressive type of RA 🙁 The Rheumotologist said in an ideal world I should be seen every three weeks! Because of demand and the state of the NHS I am seen every three to four months. Good luck x

  • Sounds like 3 weeks isn't actually that long then. I will continue waiting for the postman. I don't remember it taking this long when I needed to see a consultant about something else a few years ago. Very frustrating when you just want to get to the bottom of what the problem is. I am naturally a very impatient person so obviously need to learn to wait given the current state of the NHS! Thanks for all the replies.

  • Rheumatology departments worldwide are under extreme pressure, too few rheumatologists and too many patients....

    I used to be impatient until I was diagnosed with RA. Then I had to learn to change my ways as everything is slow! Time for appointments, time for meds to work, time for meds to clear our system so you can start another med, time to get referred to other specialists like podiatrists, etc, etc. And that not counting the frustration of having a body that doesn't move as fast as it used to either. I am now hugely calm and patient....

  • Very wise words - thank you.

  • Yes, when you've got RA you really do have to be the patient patient!!!!

  • My letters from the hospital arrive around 2-3 weeks following appointment

  • I usually get a letter after two weeks. One (which went incorrectly to my usual rheumy for checking but she was on maternity leave) took seven weeks. I called the rheumy team several times but they just said it was out for proofreading/signature and they would chase it.

    I was waiting for new meds and a scan, so a seven week delay in the letter held everything up.

    In the end I called PALS (the patient advisory liaison scheme) and they were marvellous. Sorted out the letter blockage and managed to short circuit the scan waiting list.

    As HelixHelix said - nothing happens very fast in this RA world 😟

  • It's doubtful the rheumatologist will write to you personally.....the details of your diagnosis & prognosis will be sent to your GP, who if she/he feels it necessary will ask you to make an appointment to discuss things.

    Unfortunately 3 weeks or even longer is not an unusually long time to wait these days.

    I waited 3 months before I saw the Rheumy nurses to discuss different medication.....& that was 18 years ago when things were not nearly as slow.

    All over the country rheumatologist's are extremely busy, & those of us with RD are lucky too see a Consultant on the nhs every 6 months.

    Why don't you try contacting the rheumatology nurses.....you will need a meeting with them before you can progress into any different medication.

    One prerequisite of RA these days is, I'm afraid - patience.

    Good Luck, hope you get sorted pretty soon.

  • I've always had a cc'd copy of the letter to the doctor in the past, so am expecting to get something. This happened in my previous appointment with the other rheumy (after two weeks which included Christmas) and every other consultant I've had to see in the past. I can't contact the rheumatology nurses because I don't have the contact info. This is one of the things I'm waiting for, hence my frustration. I'm sure now I've posted this, the letter will arrive through the letterbox today! Otherwise I will have to resign myself to being a more patient patient!

  • Hi HEB17......If you call your hospital main switch board they will connect you with the rheumatology nurses.....or give you a number to call. You will probably get an answerphone as they are very busy,but once you are in contact, if you are lucky you will be allocated a nurse....& things will start moving,

    I now communicate my my Rheumy nurse by email......sometimes takes a few days for a reply, but on the whole I find it better than phone calls.....I can write everything down & not miss things out & she can look back over previous history & not repeat previous answers that haven't worked out.

    As has been said here many times - it's a slow old process!

  • Hi. I usually get a summary letter 2-3 weeks after my consultant appointment - a copy of the one sent to my Gp. As posts above have said, rheumatology depts in the NHS are under a great deal of pressure which can be frustrating when you are in pain or waiting for a meds change but I tell myself that thankfully a wait is unlikely to kill me. I guess in a health system under increasing pressure I have to concede that cancer investigations ( a former colleague has just been diagnosed) and conditions that are immediately life threatening (OH had a stent put in recently for a severely blocked heart artery) will and should inevitably take priority. We do have to 'fight our corner' though!

  • I've never had a letter from my rheumatologist regarding anything about anything! 🤔

  • The letters are between the doctors, not addressed to you, but you are entitled to get a copy of what they send to GP. Just ask your GP.

  • Mine usually take about a month to come through.

  • OH has at all manner of problems around communications between his hospital rheumatology dept, his GP and himself. They've lost things, not sent letters, not recorded or sent blood test results, made incorrect appointments - and this is all in 3 months! He's been constantly chasing the hospital, the rheumatology dept and the GP. My advice would be that you need to make sure you're clear on what should be happening, and chase the relevant departments to make sure it actually is. I don't think it's that the staff don't care or are incompetent, I think they just have no time. Good luck.

  • Hi

    My letters have always come through in a matter of days... I'm the same as you had 2nd appoint with Rheumatologist & he prescribed mtx & folic acid but I can't start until I have a clear X-ray, I have appointment on the 16th March with RA nurse for meds education and also the X-ray...

    I hope you here something soon. I see Rheumatologist at Sunderland Royal

    Take care

    Sue

    X

  • Hello, well as everyone has said below, you need to have a lot of patience if you have RA. I generally have to wait around 8 to 10 weeks to receive a copy of the letter sent to my doctor, and sometimes I don't get a copy. With the changes to our system - being 'electronic' in Cambridge, the letters written by RA nurse get sent by scan and email to my doctor, the same day. Unfortunately it then takes the doctors a day to scan the letter into my notes, another day to show the letter to the doctor, another day for the doctor to sign a new prescription, and then on the fourth day I will generally receive the medication I'm meant to!

    I know that sometimes I don't get a letter until after the xrays/ scans etc. So can sometimes wait even longer. I usually make an appointment to see my doctor and go through things to bring him up to date face to face. Much easier. Sometimes I find my consultant has written to my doctor, but not sent me a copy. So it's always good to check.

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