Back on July 21st I had an NHS consultation where I expected to be given MTX and be on my way to recovery but the consultant wanted to give me an MRI scan on my hips before prescribing targeted treatment. Fair enough as I am keen to get the correct diagnosis. I have semi private health insurance that covers diagnostic procedures so asked for my referral to be sent to a private place. I was sent a letter to say that having a private scan would not allow me to 'queue jump' and I'd have to follow up privately and I replied that that's absolutely fine. Thing is that he also gave me a course of steroids but recommended that I not take them until I've had the scan so that I didn't mask the illness. So having the scan as early as possible would allow me to at least take the steroids and reduce the pain and inflammation while I await the next NHS consultation. For almost 4 weeks now I've been checking whether the referral had been received yet and then ringing the consultant's secretary's answerphone to check whether it's been sent (and not getting a response). At last today I received an apologetic email to say that the referral would be sent today. It'll still take a couple of weeks probably to actually have the scan (probably would have been quicker on NHS in the end) but at least I know that I'll soon be able to start taking the steroids which I hope will do more than Naproxen which isn't really helping too much. I'll be glad to be able to get on with life a little more!
Hope in sight: Back on July 21st I had an NHS... - NRAS
Hope in sight
Sorry to hear it’s taking you so long to get some treatment.
I think many more people are resorting to Private treatment these days because the NHS rheumatology waiting lists are so long….in fact all NHS appointments seem to take a long,long time.
I think you are probably on the right track- I have been waiting three months for nerve conduction tests on the NHS…..so I had a private appointment with my rheumy yesterday & I am getting them done privately asap!
But even private appointments are taking longer …because people who in the past would not have considered private treatment…..are in pain so are raiding the piggy bank & getting treated privately.
Hope your appointment comes quickly & that your rheumy will be able to start your medication.
Thank you AgedCrone (seems so rude to call you by your username!). To be fair, I’ve generally been impressed with my NHS treatment here but this seems to be a glitch where my referral got missed. I think that if I’d not got the insurance, I’d have just got in the NHS queue and I’d have got my scan done within the next week or so according to the consultants estimation at the time. Ah well, hopefully the NHS slot will be put to good use.
Believe me I am a miserable aged crone this morning… I have friends coming this afternoon and I was going to put my lovely new cushion covers on my garden cushions and we were going to sit calmly looking out over the fields having tea and cucumber sandwiches……but it’s been raining all night…. so now I’ve got to rush around making inside tidy! Dammit!
I think it’s heads you win tails you lose with the timing ….private versus NHS…depending on how busy the radiography departments are.
I fully expect to wait a few weeks to get my MRI privately ….as the hospital I attend only has one scanner.
Hope you have better luck! 👩🦯
Hope you have a nice afternoon with friends and aren't too exhausted from getting the place ready! We often like to entertain outside and when plans change at the last minute it can be quite a dash to get organised.
I think that the waiting time for my scan will be around 10 days once they have all the details.
I’m sorry to hear you have to wait, it’s not nice when you’re in pain. When I first started on this journey, I was due to wait 4 months for a Rheumatology appointment (and that was well before Covid) at the time I could hardly walk, but I’d had my bloods and the RF and ESR were really high in particular. In the end my GP phoned the Rheumatology Dept and discussed my bloods and my GP’s examination of my swollen joints over the phone with a Consultant, who apparently said he was 99% it was RA and my GP was allowed to give me Prednisone to tide me over. When I eventually had my appointment with a different Rheumatologist, she was a bit peeved as my symptoms had disappeared because of the Pred, but prescribed me Mthx anyway. Since then, many years later, I’ve had multiple flares, so she has seen for herself.Recently she sent me for an MRI due to hip pain, I waited 3 months, but it did show severe inflammation, so she added in sulphasalazine.
I hope you get sorted soon, it’s really horrible to have to wait, you have my sympathies. Hopefully it’ll get sorted and you’ll be on the correct treatment in no time at all.
x
I think that my problem has been similar. I have v high CRP and anti-CCP tested by GP. I did get a private Rheumy consultation and they gave me a steroid jab to tide me over to the NHS consultation so that I could go onto DMARDs. Of course when I saw the NHS consultant, inflammation was reduced and he was having second thoughts about the original diagnosis and so wanted the scan. By now the steroid injection is wearing off which is good for the scan but not so great for me. I don't know what is expected from the hip scan - I do get a lot of pain there but to be honest, my worst is my shoulder. I'm not sure whether to take the prednisolone as soon as I've had the scan so that I feel better or wait for my next consultation so that I'm seen as I am.
The NHS Consultants don’t like us to take steroids before they see us as it masks the symptoms, and I can understand that. But I had started to feel ill in the December, by the time I’d had my bloods and X-rays it was Christmas, so all was on hold until January, then I get a letter from Rheumatology saying my appointment was in April. I said it was ridiculous to ask me to wait that long in so much pain, plus I couldn’t work, I’d had already had 6 weeks off. I’m glad my Rheumatologist took my GP’s word for the fact she actually saw my fingers like big sausages, it was also in my shoulders, knees, hips, even my jaw. I managed well for 2 years on just 10mg of Methotrexate, but now it’s increased and I’m also on Sulphasalazine.
My main issue is my right hip, even now it’s better, but not 100% right. I’d had a steroid injection and though I did feel better before the MRI, my ESR was still in the 100’s, and the scan showed up severe inflammation 🤷♀️
I hope it all goes well for you and the MRI will be done soon, and you can start on DMARDS. 👍👍
I've had this since March and decided to reduce to 16 hr a week until I get treatment that works because the months have just been slipping by. It's working OK at the moment although the full wage would be preferable. Fortunately work are being really understanding and will let me play around with hours until I find the sweet spot. Hopefully by the end of the week I'll know when the MRI scan is going to be!
That's a shame when you were trying to get things done more quickly - but when I had an MRI scan requested on the NHS in May, I got it done within three weeks - on a Sunday lunch time - so they are obviously doing their best to get things done asap.
I was told that it could be 4-6 weeks on NHS which would have been fine but having the insurance I thought I may as well get it done in 2 weeks and start taking the prednisolone. Had I know that getting the referral would take 4 weeks, I'd have just left it to the NHS. I can't complain as I know that lots of people have it worse than me - I just wonder whether private insurance is even worth it...In the first instance I saw a consultant who couldn't prescribe and so had to wait for the NHS one and now I try to get an earlier scan it is delayed and I have to go back to the private consultant afterwards before I can use the NHS (local rules) but will be told again that I need to have an NHS consultation to get the DMARDs prescribed. So it's basically completely derailed the process.
I gave up my private medical insurance when it got beyond a joke age wise…. I started off with great intentions of opening an account and putting the insurance money there ….but in fact I haven’t needed to resort to that.
I have managed by just paying for needed tests…..then going back for my normal nhs check up armed with a private scan….so rheumy knows “wot’s wot” & can proceed knowing what he’s dealing with.
I thank that might be the way forward with a disease like RA…because with waiting lists as long as they are ….people are going to miss optimum treatment.
They seem to be still outsourcing to private facilities. My MRI wasn’t in my local hospital, but miles away in a specialist facility where they only did scans etc, there were lots of other NHS patients there as well as me. I was just glad to get it done, even though I had to wait for ages, as the NHS are definitely under a lot of strain right now 😔
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