11 weeks to go :-/

Hi all, well I'm in week 20 of my 31 week waiting time to see a rheumatologist for the first time. Seen my referring GP last week and she was not impressed that she put in an urgent referral yet they put on the general waiting list. She did repeat blood tests cause of being on naproxen and even though the naproxen hasn't affected my kidney function my inflammatory markers were still raised. She has now put me on an extra 250mg of naproxen so a day I'm on 1250mgs of the stuff a day. She is also a member of a medical board and her exact words were "I love writing angry letters, I don't think it will get you seen any sooner but trust I am going to kick some arse on your behalf". Still in a lot of pain, it's now becoming a constant daily thing and I'm at that point where it's getting boring now. Like I said 11 weeks to go

15 Replies

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  • I feel for you , what a time having to wait to see a consultant , hope you get fixed out soon

  • Hi Ray, has she not put you on an oral steroid to get you through the waiting time? She could really lower the dose closer to your appointment so it doesn't mask your symptoms?

    Prednisalone or similar is a devil drug but it bloody works.

    Good luck.

    Mx

  • Steroids haven't been mentioned, she up'd naproxen cause she didn't want to put me on codeine or tramadol cause of the fear of addiction

  • Well I'm on Tramadol too for pain but I only take it when I really can't stand it.

    Where is your inflammation Ray?

  • Fingers, knees and heels are swollen but the pain is in wrists, shoulders, ankles and feet aswell as hands, knees n heels

  • When I had my first Consultants appointment last year, (Polyarthritic symptoms started in earnest at the end of May and I was seen in August so about a 9 week wait in total)

    My consultant praised my GP for getting me on steroids quickly , apparently the fact I responded so well to them going from complete incapacitation to 75% fit in the space of days was an indication of Inflammatory arthritis in itself.

    As my appointment grew closer my GP wrote a tapering schedule I had to strictly adhere to.

    It was safe but quite dramatic and meant I was able to present properly to the Consultant but didn't suffer too much while I waited.

    If things are bad for you perhaps you could ask your GP her reasons for not trying this route?

    Obviously you might have other medical issues that could prevent the use of steroids.

    I can't believe huge doses of anti inflammatories though are any better for you to be honest.

    Hoping you get seen sooner than you expect.

    A phonecall to the admin team from your appointment letter, explaining how much you are suffering wouldn't go amiss. They might give you a cancellation. It's worth trying.

    Mx

  • I've already asked about cancellations but they are only offered to people who have been on the list for 26 weeks or longer, the state of the NHS in Wales

  • So sorry about that Ray. What an utter pain in the backside ( literally)

    Sending much sympathy.

    Mx

  • From personal experience, I am having nightmare withdrawal symptoms from a brief (2 week) dose of steroid Prednisolone tablets, which are set to last into next year!! but find Naproxen the only thing that actually helps my inflammation and have taken it daily for three years with no side effects or damage. Oramorph (liquid morphine) is brilliant for pain and I have taken it on-and-off with no addiction or withdrawal symptoms over the past three years.

  • This seems just wrong. Phone the hospital and ask to speak to rheumatology appointments? Tell them your GP has asked for an urgent appointment. If no help call one of the theimatologist secretary's and explain see if they can help.

    You can always wrote to the hospital chair ( they are often helpful) or call Patieng and liaison services and complain!

    Sometimes you have to shout loud in this game

  • So much for the 6week window my doctor said I was urgent got seen within two weeks as he said guidelines were the six weeks window for referral hope you get sorted soon

  • Hi I sympathise in total it took 9 months for me from point of referral to rheumatologist! 9 painful long months so I feel your pain! I went via orthopaedic first as go referral was carpal tunnel - I was on waiting list for surgery! Eventually saw orthopaedic surgeon who referred onto rheumatologist! But of a mess - held together (just!) with steroids prednisolone namely and pain killers...lots of em! Hope you get things sorted soon. M x

  • Hi. This waiting time is unacceptable. It is so difficult now with the NHS having so many problems. We are told we need to be started on medication asap to prevent further damage with this disease but there isn't the staff to deal with the workload. I think where you live has an impact on this. I feel very fortunate that my rheumatology team is pretty quick to deal with problems and has 4 rheumatologists and a team of brilliant specialist nurses. Keep ringing for a cancellation if you can. As much as I disagree with what I am about to say, I would advise going privately for your first appointment if you can afford it. After the first one you can continue on NHS. Needs must! Good luck

  • Hi there, I agree with above post from Sheila and I would go private for your first appointment which is what I had to do and paid £150 then went on to nhs list but at least it got the ball rolling so to speak. I know you shouldn't have to but in my experience it was the best £150 I spent as he arranged more blood tests, Mri & X-Ray's straight away then started the treatment of mtx which is another story & journey in itself!

    I wish you well and do hope you can get seen sooner than another 11 weeks by paying. XX

  • Your GP could do a lot more than she has done so far.

    A patient is legally entitled to an appt with a specialist, and to commence treatment, within 18 weeks of the hospital receiving the referral letter.

    If you do not get the appt, then you are entitled to be treated privately, free at NHS expense. You should contact your local Clinical Commissioning Group and ask for the contact details of the CCG that governs the hospital to which you have been referred. That Clinical Commissioning Group has to find out why you have not received an appt and ensure that you are treated privately if the hospital cannot see you immediately.

    Something cannot be urgent just by saying it is in a letter (which sounds ridiculous to me). Has your GP done any ultra sound or MRI scans to prove that it is urgent? Blood tests are only an indicator. The advice for GPs on the website of the hospital I attend clearly states that GPs should phone in urgent cases. If RA is suspected, you are supposed to get an appt within three months.

    Your GP could have given you a pin number, under choose and book, so that you could look on the NHS website yourself to see who has the shortest list or she could have looked for you. You can go to a hospital outside your area if you want to.

    I don't think I would be pushed into paying privately because that is what I did and it delayed matters.

    I have already said all this some time ago in response to other people who were kept waiting.

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