I feel like weeping. I'm finally being investigated for RA after a year of going to my GP with severe pain and swelling in my knuckles.
I have two major gripes - GP has referred me to Rheumatologist for diagnosis and treatment - I've just had a letter with my appointment date, to my dismay it is March next year. Secondly, I had x-rays on my hands and feet three weeks ago. Not having heard anything from GP re results, I rang the surgery yesterday, only to be told that the results were in, but the doctor wanted to discuss them with me over the phone. Great - but the earliest date for a phone appointment is Aug 28th. I realise that covid has had a massive impact on all areas of the NHS, but everything I've read about RA says that early diagnosis and start of treatment is crucial.
Not sure what to do now, and so stressed. I was diagnosed with GAD during the first lockdown, and this really isn't helping.
Written by
litbee
To view profiles and participate in discussions please or .
I'm sorry you're suffering and your rheumatology appointment is so far away. May I suggest you contact the surgery again and ask for a GP (emergency/same day) appointment as you are in so much pain with your hands and feet and it's affecting your ability to do daily tasks and making you feel really despondent. Do say that as the tests were done three weeks ago you have already had a long wait!! If necessary ask for any GP not your registered one.
The GP could prescribe a course of steroids which would reduce any inflammation and make your hands hurt less. I also suggest you ask if the GP can get your appointment brought forward from March to this autumn.
Many of us find that we need to be politely assertive to get listened to and push for some action to result, and I suggest you do just that.
Hi, and thanks so much for your quick reply! The earliest GP appt (not even with my own GP 🙁) is the phone appt I have on 28th - if I want a face-to-face appt it will be after that. Really not good enough, especially as all I wanted was my X-ray results! Really don’t know why I couldn’t be given the results over the phone, and then make the follow-up appt to discuss the results, but the secretary was adamant that was ‘not the way things are done here.’ You really couldn’t make it up 🙄
When my GP booked my X-rays, she said that all she could suggest is Ibuprofen for the pain, and that only the Rheumatologist can prescribe steroids.
I’ve phoned the hospital, and asked for an earlier appt than next March - apparently not, as they are fully booked. All they can do is put me on the cancellation list.
All in all, a ridiculous situation. I’ll try and get an emergency GP appt, but I don’t hold much hope.
Thanks for your help, Lolabridge and I’ll let you know how things go!
Hello litbee. When I had my first appointment with the rheumatologist he diagnosed me and said he would prescribe some prednisolone. I waited three weeks to hear when I could begin taking them (I was in a lot of pain, with no medication). I finally rang my GP and told him I couldn’t bear the pain any longer, he was angry and said I shouldn’t have been left without medication. He prescribed the prednisolone and had a strong word with the rheumatologist, it turned out that he hadn’t issued the prescription.
You have to be an advocate for yourself and keep pushing for what you need. I hope you get the treatment you need as soon as possible. Best wishes. 🙂
Agree you need to push and I get it is stressful but they would not accept pain so why should YOU! If need be go to the surgery with assistance ie backup polite but firm. My first few goes was a nightmare but now even with COVID the GP surgery is listening and dealwith pain management. I get a lottery with GP surgeries but waiting is not an answer when in pain.
Our GP practice is locally renowned as being terrible, unfortunately none of the others are taking on new patients, otherwise I’d change! Thank you for yourreply
I would echo the previous post - you do have to be assertive. Ring every day if you have to! Keep calm, keep repeating that you are in a lot of pain, a diagnosis is needed and a treatment plan set up. Being asked to wait that long is unacceptable.
Hello, just wondering if there was any chance you could go private initially? I was fortunate enough to have health insurance through work so went private at first but had my nhs referral running in tandem - this was a few years back so pre covid and took about 4 months to get the nhs appt by which time I’d been diagnosed privately and started treatment which then got carried over quite seamlessly. Given RA is a chronic condition, once diagnosed, health insurance we’re keen to boot me off but I was able to get them to cover me until my first nhs rheumatology appointment. If you don’t have health insurance, then it is a fair amount - I think adding up all the consultant appointments, blood tests and scans I had over that time probably came to about 1.5-2k so understand if that isn’t a viable route. Really hope you manage to sort something out.
Hi PP01, both husband and I had private medical insurance, but that ended when we changed jobs. I asked GP if I could pay for an initial consultant appointment, and then switch back to NHS for future care - she said that wasn’t possible. Think I need to double check everything she has told me, as her advice seems totally unreliable. Not really good enough. Thank you
That’s very odd and definitely not the case I don’t think - if your GP won’t give you a private referral letter then hopefully you can just make a private appointment yourself (I think they sometimes ask to see your referral letter but it’s not essential I believe). Good luck!
Sadly this is the case throughout the country……& the only sure way to get a quicker Rheumatology consult …..if you can manage it ….is to make a private appointment…although even those appointments are taking much longer to get….but you would get some effective disease modifying drugs, appropriate painkillers and you could then transfer back to the NHS for your follow up treatment.I know that’s not want you want to hear ….but I’m afraid that is the situation right now …..with the Pandemic having made what was already a slow process ever slower.
Once you get some efficient painkillers you will be able to cope much better……..& your GP will be able to issue the prescriptions requested by the Rheumatologist.
I hope you get some sort of appointment very soon.
Thank you AC. I suggested exactly that to my GP, only to be told that isn’t possible that it’s either private care for initial consultation, and also for future checkups and treatment - or NHS throughout ‘continuity of care’ apparently. I will be checking this!
Read up NICE Regulations..if you look back through some of the posts here that’s exactly how a lot managed to get an initial diagnosis and got started on treatment.It sounds as if your GP belongs to the group of GPs who resent having to refer patients to specialists.
In fact..if you can get the name of a respected Rheumatologist in your area you can self refer-telephone his/her secretary- explain your situation & ask her the Consultant’s fees…& if she/he has an NHS list that you could transfer to.
You say you have already had some Xrays on the NHS..so a local Rheumatologist should be able to access them….although there are some areas where that isn’t possible.
Look at it this way..RA isn’t going to go away on its own …..and so the sooner you can get some sort of professional treatment the more comfortable you will be.
I can get a telephone appointment on the day and can be seen within 48 hrs so long as you are happy to take any GP. GPs must see emergencies, they cannot put off people in pain for weeks on end.
Personally I'd be onto the practice manager with an email or letter dropped off to the receptionist on Monday morning, requesting a written reply with 7 days.
A practice being busy is not the patients 'fault', it is the GPs for not employing enough staff, and putting profits first.
If the practice manager does not provide satisfaction, then a formal complaint would be my next step.
Advocate for yourself, expect good care.
If you accept poor care that's what you get. Quote some of the most relevant NICE guidelines in your letter.
I waited 5 weeks after a fall before my GP would refer me for an X-ray…which revealed two fractured vertebrae…even then he was not interested.Where I live GPs do as they please…none of them work a full week….& right now 21 days is the usual wait for a telephone consultation.
The practice manager doesn’t appear to know or care what day of the week it is. Thankfully my rheumy is not like that at all…otherwiseI would have left the practice years ago.
I totally agree with Lolabridge and old timer above. When my RA symptoms started with severe pain and swelling in 2016, I’m afraid I never left the gp surgery alone. The co codamol thatI was prescribed didn’t even touch the pain and I told them that. Eventually prescribed steroids which worked brilliantly.
I know this isn't ideal and we shouldn't have to do it but is there any chance you could go to a Rheumatologist privately for your initial appointment? You will get in much quicker and then you can continue treament on the NHS. I did this but worried about skipping people. I learned that this wouldn't be the case as all Consultants and Specialist Doctors have so many private appointments allocated per week so you wouldn't be taking the place of anyone else.
Hello 👋 I definitely understand where you are coming from 😔
Luckily enough I have an excellent GP, plus I was diagnosed 3 years ago, before Covid.
Have you had blood tests done yet?
March of next year is unacceptable. But even pre Covid I had to wait 4 months myself, but after the bloods came back and I was in so much pain, my GP phoned the hospital and spoke to a Rheumatologist over the phone who looked at my bloods and x rays and said, it’s 99% RA and told her to give me steroids.
Of course when I actually had the face to face appointment with the Consultant 4 months later, she was peeved as she wanted to see me with my swollen joints, but I pointed out, it wasn’t acceptable to make someone wait for 4 months in agony. 😖
You do have to push, and I can only echo those on here who have mentioned going private for the beginning at least, not ideal, but if you were in a position to do so?
Thank you Chockyuk. My blood tests came back fine, apparently. I’m happy to pay for initial consultation, but have been told that I can’t then go back to NHS care. I need to double check that!
Sorry to hear about the pain and frustration. Not having a diagnosis and being in a lot of pain is stressful enough without having to fight for every inch of a treatment.
Because the waiting was so long to see a Rheumatologist, I went private for the first appointment (£240). The Rheumatologist was very thorough and I stayed with her for about 45mn.
I asked her to be redirected to the NHS as I don't have insurance and needed to pay from my own pocket. She agreed without questions and her intervention enabled me to have a NHS follow up appointment with her (yes the same person) very quickly (3 weeks from memory)
I felt bad about" jumping the queue" because I was privilege enough to find £240 of disposable income I could use. But the pain and the worry were abominable
Hope you don’t mind me jumping in . You can book a appointment direct with a consultants secretary no need for a Gp referral . Just find one with good recommendations and also does NHS( most do) good luck
Thank you J1707 ! I have an appt with consultant - March next year 🙄 I’m on their cancellation list, along with many others. It’s really not good enough, I’m going to have to keep hassling GP to even start pain relief and treatment (which she says she is unable to do 😡)
Hi and thank you Happy 5. Yes, I rang RA dept, they’ve put me on their cancellation list, but said not to hold up too much hope, as that list is also very long 🙄
Hi Litbee. I was diagnosed with RA nearly 30 yrs ago when i was 21. My mother was a nurse & saw how much agony i was in. So she took me to A&E. They did blood tests, xrays. Then kept me in for 5 days. Told me the crap news that i had RA. I’m on an infusion of Infliximab. I go to the hospital & get hooked up every 6 weeks. I’ve been having this treatment for the last 15yrs. I wouldn’t be able to walk without this stuff. I have 2 serious eye conditions too. So this drug is fantastic.
Maybe you should go to A&E. I know how desperate you can get when you’re in so much pain. Tell them you can’t wait to see your GP. Show them how desperate you are. I’m sure they could at least give you voltarol or co codamol. Steroids even. You can’t carry on in this much pain! No one should have to. Good luck. X
I’m going to ring GP on Monday. It normally means holding on the line for 30 mins, in a queue of more than 20. My GP surgery is renowned for being terrible in all aspects, but no other surgeries in my catchment area are taking on new patients, and I can’t register outside that area. So I’m pretty muck stuck 😡
Hi Litbee, I'm also new on the journey. I've had pain and swelling of my large knuckles on my hand. My GP does econsult so you apply for an appointment online(for a gp appointment) and I was contacted by their practice physio who organised hand/feet xrays and bloods. He also did an urgent referral to a rheumatologist. I looked up the NICE guidelines and if RA is suspected then an urgent referral is meant to be done. I had this appointment within 3 weeks. Maybe its worth asking your gp practice that if they suspect RA you could be referred via this route? Another option is seeing the waiting time is shorter at a different hospital vi's 'choose and book'.Regarding your results, if you ask your practice for enhanced access to your medical records, you can see all your test results via the NHS app. You do have to sign a disclaimer as you can see your results before a Dr may have see them and you may read something that could really scare/worry you and not be able to immediately discuss it with a GP.
I really hope you can get an earlier consultation.
Hi Cats, thanks for your reply! My GP also does e-consult, unfortunately at the moment the option to book online appts is ‘temporarily unavailable’. 👹Even when I rang for x-ray test results, I was told that the ‘test results ‘ staff couldn’t give results as the GP needed to discuss with me over the phone , ‘although not urgent’. I assumed that the GP would ring ASAP, but it seems not. I have a phone consultation in 3 weeks - couldn’t give an indication of morning or afternoon, so I could stay at home for a crappy phone consultation that may or may not happen, GP ( locum) has referred me to refer to Rheum consultant (appt booked for next March 😡😡😡) but she can’t diagnose, other than Iboprufen for the pain.
So I have a wait of another 3 weeks for test results, which should have been available last week, ‘Unavailable’ due to apparently non-urgent...
Still no firm diagnosis - currently studying with the OU, who have said that once I have a diagnosis and medical evidence of RA they can provide me with extra support, printed materials etc. I have explained that I can’t get a diagnosis...
To add to my woes, I phoned the RA dept of the hospital, asking if I could pay privately for an initial consultation, and then go back to NHS care. I was told that wasn’t possible, due to ‘continuity of care’ .... aargh.
Sorry for the long post - I’ve given up ringing the surgery - 25 mins on hold today. I’m going to e-mail the surgery manager, and also PALS. I realise that covid has had an awful impact, but this can’t be right.
I’m also going to contact private Rheum dept, and check if they can, after a first appt and diagnosis, refer me back to NHS care.
Good luck for this morning with the GP it’s so difficult. Let us know how you get on.
A&E may be a good idea as was suggested above.
Otherwise google private rheumatology and call the private hospital to check how much it would cost for an initial consultation and how long you would have to wait. Then you have the info and can make a decision.
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Best wishes.
Good luck with your efforts to get your sorry situation sorted out. I too went privately for my first Rheumy appointment (due to long waiting times pre-Covid) then the consultant transferred me to his NHS list - it's definitely possible to do! Best wishes.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GP is so frustrating
Long and frustrating road
Newbie
Frustrated !!
