Did I do wrong going PRIVATE !!

My wife could not bear to to see me in severe pain any longer and thankfully she did and it was money we could ill afford, As my GP's referal letter was still in the IN TRAY at hospital awaiting a decision on when i would be seen in the RA clinic,Then she got a private consultation within 2 days through my GP and 2 days later i had a cat scan and and an appointment with my Chest consultant the following day which was scheduled for the middle of April, I was told i was being refered to my local RA consultant by the Private RA and the Chest consultant so I contacted him just ask what medication could be used for my RA as all medication recommended by the Private RA was totally rejected by the Chest consultant because of my lung condition.Only to be told as we have not met it would be appropraite to discuss my concerns with the Private RA.Seems like sour grapes to me and i am still no further forward to gettin treatment for my RA. mattcass

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  • There is often some difficulty in transferring information from private to NHS, and the best results I have heard have been where someone has seen a rheumatologist who is in their NHS area privately, and then been referred back to the same rheumatologists NHS clinic. Its quite difficult to have meds prescribed by private rheums though, because they usually need reqular follow up and blood tests that you would want to get done within the NHS by your GP, because privately that would be expensive.

    I saw a private rheumatologist because I have had a fairly complex history and I needed that 1.5 hour initial consultation to even begin to go through my history and do a full examination. What I got out of it was reassurance that I wasn't going nuts and that there was something going on, plus I got a working diagnosis as well. The private rheum. couldn't prescribe for me though, and had to write to my GP with a recommendation, and then have GP prescribe and follow up. If I had needed DMARDs, that system wouldn't have worked, because GPs generally won't prescribe DMARDs unless instructed by NHS rheumatologists - because of the need to follow up closely and do regular blood tests.

    A private rheumatologist can be a big help if you aren't getting anywhere with NHS, and for second opinions and a more detailed look at you, but I'm not sure they are that useful if you are just wanting to hurry up the system. The other useful thing I got from my private rheum. was that they identified who I should be seen by in the NHS, which wasn't the usual rheumatologist clinic here, but someone with special interest in spondyloarthritis (which is what I have).

    I'm definitely pleased that I did see a private rheum. but I don't know that it has made it any quicker really to actually get treatment. I could only just afford it too, and I think I'd probably say to other people that unless you really can afford it, don't bother. Just keep on working with your GP to get you an appointment as quickly as possible. The national targets for RA waiting lists are reducing all the time, so you shouldn't actually have to wait that long.

  • earthwitch thank you, You dont think of waiting times and money when you are walking about during the day and night crying like a baby with the pain, we deserve better,mattcass

  • That was my feeling too. I think now I'd be much more inclined to go off to my GP, and make sure they let the rheumatologist know what was happening. GPs can be quite good at hurrying up appointments, and making sure the rheumatologist is really in the picture. They can also do things like give you short courses of steroid, or pain relief that can tide you through, though things like steroids will mask symptoms so might make it harder for the rheumatologist to eventually diagnose.

  • Hi, that is an awful situation to be in. I think the best way is to go to your GP and tell him about your severe pain and distress so much so you paid to see someone privately,that speaks volumes to me. Ask the GP to ring the hospital and tell them of your severe distress as often that will help th e hospital to work out you need to be seen as an emergency, tell them about your swelling too as this often helps themsee you quickly and if you can't move about tell them. I woke up stuck and in pain and swollen and my GP phoned the consultant direct for me as it was so bad.

    The other thing You can do is go to A and E if your pain is so severe you can't manage. They will call OT an emergency rheumatologist to see you. Only you know how bad you feel. So tell them,they haven't even seen the letter so they don't know about you, let them know!!! Hope u get sorted soon! Axx

  • allanah thank you,

  • I had a totally different experience. I was diagnosed and initially treated privately but found it hard to get to my RA blood checks as the private hospital was a distance from where I live.

    After speaking to my GP she advised I stay where I was while she made my referral to a local NHS hospital as it could take 3 months. I did as she advised and after being accepted for treatment from my local hospital ended my private treatment.

    I know that people, GP's included don't like you using private treatment, but I however think and so does my GP that it saves the NHS money at least initially as you are paying for your own treatment.

  • sparker thank you, The Private RA did more in one day than the NHS did in the previous two months, mattcass

  • I found that too. Also the private ones written summaries to GP were so much more detailed too. My Gp passed them on the the NHS person.

  • I agree with Alannah to ask your GP to get in touch with the Rheumatologist. If they csnt talk to you they can certainly talk to your GP. My GP recently referred me for an appointment quickly as I had a big flare, by faxing the Rheumy, as there is a backlog at hospital in Rheumatology at the moment with even routine appointments. When I was diagnosed RA many years ago I was (am) in BUPA (long story but I use/used it for other conditions) Was told by my Rheumy that I would exceed my BUPA consultation allowance etc with BUPA and as the Rheumatology department had a helpline etc I would never really have to wait to see anyone. That was true until this past year or so when three monthly appointments have now gone into five months as then cant fit everyone in.

    I have also been told by BUPA that if I need an operation on my joints, I can use BUPA for "one offs" in the RA scenario and scans too which I haven't done so far. (My RA was not a pre existing condition when I joined BUPA many years ago). I just cant use it for regular follow up appointments or physio with my RA.

    I am sorry you and your wife have tried to speed things up to try get solutions and be left dangling so to speak. That is not good and frustrating especially when I can understand your level of pain and anxiety. I hope it is all sorted soon and you can get some treatment and relief. Good luck, Matt.

    Neonkitty ;-)

  • neonkitty thank you, i know that the RA is going for my Lungs i can feel it myself as they have been good for 6 years,All I am trying to find out is how much trouble is the RA causing to my lungs without any medication surely i am not asking much.mattcass

  • My GP really helped me. In November I had a letter from the hospital with an appointment to see the rheumatologist in January. I tried to hang on but the pain which was in my shoulders wrists,hands,knees hips and two toes just got worse. The diclofenac was upsetting my stomach and the high strength cocodamol hardly touched the pain.

    When I went back to him at the end of November he said that I couldn't wait that long and put me on steroids and sent an urgent letter to the hospital. That was Wednesday. I had a call from the hospital on Friday and an appointment with the Specialist on Monday. . . I was so grateful to him.

    I do hope you get relief from the pain and a treatment plan soon . ..

  • Matt, do ask the dic Ti hurry it along if they can. You have every right to know. They are not being fair to make you wait. Good luck.

    NK ;-) x

  • Most unfortunate typo ... Dic!!! Ooops!! Doc to ... of course! Heh heh. Seriously, sorry, I am rushing to get dinner sorted as we have been out to see my Mum.

  • neonkitty thank you, Hope your Hic-Ups improves,mattcass

  • Hi Mattcass

    I'm sorry to hear that you are still no further forward in getting some treatment for your RA after the private appointment. As the others have mentioned, it would be worth asking your GP if they could write a letter or contact the hospital directly to mark your NHS referral as urgent. Sometimes this can hurry things along. Hopfully then the rheumatologist would be able to work with the chest specialist to find an appropriate medication for you.

    Kind regards

    Sarah Kate

    NRAS

  • Sarah Kate, Thank You Just back from the GPs and he confirmed that I am back on the NHS and its just a case of waiting for the RA to send for me the GP said.Mattcass

  • I'm glad to hear that Mattcass, I hope your appointment comes through soon.

    Kind regards

    Sarah Kate

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