So frustrated! :-(

I was seen last Friday and was diagnosed with RA. Once he diagnosed he sent me for X Ray's and blood tests and advised me I had to return within 2 weeks so that he could review them and start me on methotrexate and hydroxychloroquine. There were no appointments available on choose and book so the consultant told me to leave it with him and he would make sure that somebody would phone me with an appointment that afternoon. Well since then I have heard nothing despite phoning each day. I have asked if I can at least book the next available appointment so that I have something set in stone in case they can't get me in sooner,but the reception team are saying they can't as the doctor has not instructed them to book an appointment. They just keep telling me they will email him to chase him up. Today I managed to speak to a medical secretary who told me that the consultant i saw is a locum who doesn't often work there so he probably won't be seeing me anytime soon, but that nobody can book me an appointment until he gives permission?! So in desperation I have phoned a private hospital as I just want to start medication and hopefully feel better soon, but they said they can't see me as addenbrookes won't release my X-rays to them until my consultant has reviewed them!!

:-( I'm feeling so cross and I've phoned PALS and they didn't know what to suggest either. I feel like I'm not going to start treatment anytime soon and it makes me feel anxious when he has said I need to be seen within 2 weeks based on the results of his physical exam.

21 Replies

  • Hi there sorry your getting mucked about and hope your not in to much pain, try phoning the helpline here they might know how to help and try not to get to stressed as it won't help your condition hope y get sorted out xxx

  • If he's a locum I wonder if you can track him down somewhere else? Have you tried googling him? If he has written any papers you may find him that way.

    Would it be worth going into the PALS office and just saying you won't go home until something is sorted out.....

    It's not acceptable to treat you like this so just hang on in there, be polite but firm, and don't take no for an answer!

    Is there a help line attached to the rheumatology team that you could contact? Keep us posted.

  • Thanks. I think he may work at Lincoln hospital so I will try to get hold of him there. When I phoned PALS all they said they could do was put me through to the medical secretaries team, but he doesn't have one as he is a locum!

    I explained to him that I start a new job shortly and I was hopeful of starting my medication before then so that I know roughly how I will be feeling.

    The rheumatology reception team must be sick of my voice but all I have asked is why they can't at least book me the next available appointment so that I have a date to work towards, but because of this elusive doctor they won't!

  • Change doctors don't wait. Can you do that?

  • I thought if your seen privately you'd get repeated tests as they'll do there own at a cost of course. Why not make an appt with the private consultant and speak directly to him as I'm sure that as its usually an NHS dr anyway that they can call for the records as well. I mix private with NHS if I need too, its never a problem as the same doctor.

  • That's exactly what I thought so I contacted the spire Cambridge hospital, but the medical secretary will not book me in until I have the CD of X-ray images and the hospital won't hand it over as my consultant has to review them.

    If my consultant had reviewed them then I wouldn't be needing to go private - it's like I'm going round in circles!

  • You may still not get started on medication if you go private, as the consultant would still have to request your GP to sort the prescriptions - which they may not want to do as there wouldn't be a formal shared care agreement. I think most folk who successfully go private, it only works out if their private consultant then takes them on as an NHS patient.

    I think I'd be inclined to go back to your GP and ask them what happens about the target time to treatment if you can't actually get an appointment. It may be worthwhile getting your GP to re-refer you so you can get on another consultant's list.

  • Yes you do the consultant issues the script and you pay for it or the insurance co. does then its passed to GP. Its not different to how the NHS works , no care agreement I'm a private patient and have been for years probably why I have no problems with my RA as I've been seen quickly and treated quickly. You can do as I do see the same NHS consultant at the local hospital but if i feel I need to see him in the meantime I just ring his secretary for a private appt.

  • You have a right to your results even if you have to pay for them i paid for mine when i had a private consultation. I am surprised at Addenbrookes and especially PALS as they weren't very helpful. You want to complain to them again about the service you have

  • Maybe if you contact the CEO's office of the hospital where this locum was employed you could ask that he be contacted as your treatment cannot commence until his report has been passed to the correct department.


  • I can't believe this is happening. I am so sorry that you are being messed about like this. If I remember rightly, when I was diagnosed 14 years ago and went privately for my first appointment, I rang my GP and told him that I wanted to go privately and he set the wheels in motion. Ask him/her to refer you to a consultant who takes NHS patients too then you can have initial consultation and injection then continue as an NHS patient. This worked well for me but of course things may have changed since then. Incidentally, I have never had xrays directly linked to RA in all those years. Good luck x

  • I was referred by my GP to the hospital you mentioned a couple of years ago, I had so much trouble trying to get an appointment, I ended up going private for an initial diagnosis then getting my GP to refer me to a different hospital. When you are feeling so ill it really is hard to have to wait. You can look into the appointment waiting lists of the different hospitals, maybe you could see if your GP could refer you somewhere else. Good luck, I hope you get seen soon.

  • Thankyou, I think people think because they're such a good hospital they won't muck you around but I've never experienced anything like it. I just find it so annoying that he's told me that I have it and that I need to start treatment and now he's leaving me hanging. In the past 8 weeks I've gone from having hardly any pain in my foot to being unable to put any weight on it. They can't keep people waiting. :-(

  • I know exactly how you're feeling & how frustrating it is, I really felt as if I was banging my head against a brick wall. Can you see if your doctors surgery can help chase things up ?

  • This is not right, you are under more than enough stress having had the diagnosis. Only thing i can think is go bang on the door of the best gp at your practice and ask them for help or another consultant to take over your assessment/treatment. I wish you luck.

  • My advice would be go back to your GP urgently as RA causes joint damage and you need to be on treatment. You could ask for your information to be reviewed by another consultant and that you should be started on treatment asap. Good luck and sorry to hear your frustration to get treatment. 🙁

  • I will try my GP again on Monday, thankyou x

  • Sent you a private message.

  • Pray, then find the doctor who saw you, get all the necessary x-rays and records from him, then fire him, then pray again :), then find a Rheumatoligist that cares and will work with you.



  • Hi sorry you are having all this hassle you can contact the unit manager and also find out about rheumatology path ways and interventions used ie specific medication - methotrexate used to treat and alleviate your condition. As it seems that the doctor you saw advised one thing but the treatment you received after this contradicted this completely. It sounds like Pals were no help at all. You can make a complaint with or without them it is your right to ask for a decent service from the NHS. Continue to contact the hospital for an appointment try the doctors secretary and explain your dilemma to her.

    Good luck sorry if this is long but I am trying to give you all the options to use

  • Hello thanks for your response. I went to my GP this morning who emailed the consultant and within half an hour he had phoned (while I was at work unfortunately) but he spoke to my husband and was very apologetic for the way that the team had acted, and that I would definitely be contacted this Wednesday with a date for an ultrasound and treatment start date. I will be starting on methotrexate and plaquenil.

    Thanks again xxx

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