Great interview. Well done Ailsa on keeping that doc under control!!! 12 week window and don't go rushing to your doctor with sore knee, get the idea she doesn't understand! Is that how you all felt?
!? ?! ?! Lol !
Radio2 interview: Great interview. Well done Ailsa on... - NRAS
Radio2 interview
Written by
allanah
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Exactly!!!! It doesn't help either when GP's don't take you seriously or nothing shows in your bloods!! you are very lucky if you have an on the ball GP though!! I also think Ailsa did a grand job, I never realised she was so badly affected, Well done and it's brilliant that awareness has been raised on such a huge radio show!!
I'm listening now, it's a pretty good show, there's lots and lots of help and advice about RA.
Is that the Jeremy Vine show? I can't seem to get it on the play again feature yet....
Normally it would be on bbc2iplayer Jeremy vine show. Then you put in date. I've had a look and it's not up yet. Maybe just a bit early ? Xx
Ailsa spoke exceptionally well, she is an absolute star and massive inspiration.
As for the doctor she gave the impression if you get on drugs within 12 weeks you can live a normal life again with no joint damage. I wish it was that easy, what if you don't tolerate the drugs, what if you get joint damage again and again from stopping the drugs for infections, surgeries, what if the drugs are not effective???? I wish I could have got through to speak to that doctor.
Oh I didn't get that impression I thought she made it quite clear that if it was caught within 12 weeks - and that was highly unlikely that it could be treated at it's best and most cases were around 9 months - I didn't actually know this at all! Ah well nice to know that it's taken as a serious condition, most people I know say 'oh my dad had that in his knee once' or something similar - given up telling anyone now.... Great site she's put up and a great comfort to those who suffer with this horrible disease.
Ps I went to the dr last October and told her I was concerned I had arthritis...she told me no chance and told me to rub some anti-inflam cream in, she did however comment on how much she liked my boots - makes me laugh a bit really, only got diagnosed in April when I happened to mention in a seperate nurse appointment I had tingly fingers, amazing really same surgery.....
Lol! Have u still got the nice boots !!
I certainly do but can't bloomin walk in them anymore.... 
That's what I was thinking..... Maybe we could have a massive shoe sale for nras!! I'm gonna sell some handbags cos due to crutches I can only use strap one as I can't carry. I used yo have loads of lovely handbags and matching shoes. Xx
For anyone who missed the programme, it's now available on the iPlayer and starts at 1hr 9mins - bbc.co.uk/programmes/b048j1bt
Just listened to it, in fact now listening to the discussion that followed as I type. What occurred to me was that it would be a brilliant idea for those closest to us to listen to who struggle to understand about the disease & how it affects us, or could affect us in the future if not controlled, when they question why we can't do things sometimes or simply refuse to accept we have a real condition & not just aches & pains. Far more effective I think than reading about it, even for someone who doesn't fully understand what we have & have RD themselves, particularly thinking of those who are newly diagnosed & struggling to understand all that's going on in their body.
Well done Ailsa, I do hope she receives the plaudits she deserves.
Just waiting for it to come on I'm interested to t hear what they have to say as I went back see my consultant today and he's referring me to see 1 of his collegues as he can't do anything else for me
Silly question - what is this 12 week window? From suspected diagnosis? From the first niggle? My RA started off as extreme fatigue and generalised pain following flu and a secondary infection. I did complain of pain to my GP but it was assumed I was recovering from my illness and the pain was very non-specific anyway.
I also went privately to get a dx as I could not get an NHS referral for love nor money, so how they can defend this 12 week period of time when people are being made to wait months just to get diagnosed is unacceptable to me.
in reply to
Hi Crashdoll...I don't think it is a silly question at all I've wondered this myself. I know I had symptoms for nearly two years before diagnosis. Is it 12 weeks or more likely 9 months from diagnosis or like you say from the first niggle? Hopefully somebody can enlightening us
nomoreheels in reply to
From the experiences of others I've read about here with lengthy waits from suspected RD when having seen their GP to actual positive diagnosis with a Rheumy I find it shockingly different to my experience & in hindsight was grateful I was living in another country when I was diagnosed in 2008. From my first visit & a good GP strongly suspecting I had RD to treatment was 2 weeks, which felt like 2 months. A further 3 months for my first Rheumy appointment but that was neither here nor there as I was already on hydroxychloroquine, celecoxib a corticosteroid & nabumetone by the time I saw him. This was the norm, I was not fast-tracked or an unusual case. The guidelines are (& how it panned out for me)
RF bloods for Suspected RD, results received same day (patient advised the same day, appointment booked same day) for........Diagnostic clinic 2 weeks later for tests to confirm & all tests undertaken........Prescribe meds (same day)........ Rheumy appointment within 3 months & every 3 months thereafter. So from suspected RD to treatment was 2 weeks.
From my experience I would compare the treatment received was equally comparable to private treatment but in a Spanish National Healthcare Hospital.
All this in what not that long ago was considered the poor cousin of the EU! Certainly not as far as the health system is concerned. Similarly for operations, no long waiting lists of the three we needed between the two of us.
My husband who has Type 2 Diabetes had monthly check ups with the nurse in our brand new village clinic (Surgery), here since returning he had been seen once, a month ago & is now under close observation & has to check his bsl's twice daily which he had no need to do himself for approx 7 years previously as checked so frequently & done at the clinic & was totally under control with meds prescribed to him which will not be prescribed here because of cost so given cheaper alternatives that don't keep his diabetes nearly as well controlled. The same for his bp & cholestorol meds, he now is having investigations for possible angina, again because the drugs he took won't be prescribed through the cost.
The healthcare ethos is the patient is prescribed the medicine which best controls their condition, at whatever cost. The more commonly prescribed the drug the cheaper the cost to the patient. The prescription charge to the patient in Spain is a percentage of the cost of the drug & whilst some are more expensive than others we calculated that overall, in spite of my h not paying for his here in the UK being diabetic which he had to there, we were better off monthly on what we took combined there, even when paying the UK yearly fee to reduce prescription costs as I have to which is another niggle, why should we have to pay for our drugs when we have a chronic condition & need them to be able to function as close to normal as we can or suffer the consequences if we don't take them? Anyway, my MTX was the most expensive of all & cost the equivalent of 1.94 for a 15ml pre filled injection at today's rate (tablets were equivalent of 25p for 50).
If I was able I would wave a magic wand & transport everyone on here to have treatment in Spain for their autoimmune disease whichever it is. I'm convinced if this was possible we'd all he happy bunnies. Shared care over there literally means that & the patient has access to everything & is included in all aspects of their condition & encouraged to question & is answered honestly without hesitation. I have a file full of my medical reports, xrays, blood tests, all manner of other related paperwork. In the 15 months I've been in the UK I added to that file a referral letter to my Rheumy, 2 copies of letters from my Rheumy Dept. to my GP following my 2 appointments & a blood monitoring book.
I've ranted again sorry, & it ended up on your post crashdoll, again sorry, but you asked a question & your initial treatment & subsequent need for having to go private because of the inability to get a referral on the NHS irked me so much that it started me thinking back to my original diagnosis & how my first treatment panned out. Fully vented now & again sorry but hope anyone who reads this understands why I felt the need to write it.
AngelaBradfield in reply to
I agree on my area we have a very good rheumatology sevice however when I was referred to the early arthritis clinic was told to expect an 18 week wait, when I first went online for an appointment there whew none available so waited 10 weeks for one. And the other thing was when I had my first blood test done I received a letter from my gp surgery to make an appointment to discuss my results bur because she didn't specify it was urgent I had to wait 3 weeks to see her. Then after diagnosis I had to wait another 2 weeks to see the nurse about starting mxt. So all in all 15 weeks and I consider myself lucky to be seen that quick, so if this gp thinks you get sorted in 12 weeks..........
Dr Sarah to me had the idea it came on suddenly, got treated on 12 weeks = no joint damage and mtx = normal life .... If only !!! Think she was trying to put over positives but to me she didn't mention realities !
Indeed allanah, really the only downside to an otherwise good discussion I thought. You may be interested in my rant above.
Yes Allanah that's the impression I got too but Aisla put her straight, I may be wrong but there's not many of us who get an immediate diagnosis at the first sign of symptoms, I know in my case I did by the Rheumatologist but that was only after nearly two years of going to the GP with symptoms, so I guess it's 12 weeks or 9 months from starting meds if you're lucky enough to tolerate them first time?! 
Lol! You guess is as good as mine x
yea i'm not sure what that doc was on about with the 12 week window! i got told i had it but then had to wait a year for them to find out what was up with my Thymus, and once i had the op to remove the Thymus, then i was put on drugs! for RD/A
Actually I got RA on March 11 th, couldn't move so saw emergency dr who sent me to hospital that day. Got diagnosed that day and started steroid infusions x3 daily then straight onto mtx day 4. So I had a one day window!!!!!!! Unusual yeah I think so !
That's even quicker than my 2 weeks but I could at least walk (or waddle!) into the clinic so somewhat more mobile than you!!
Lol!!! Xx
Yes, brilliant Ailsa and thanks to Jeremy Vine for giving us a burst of Queen to follow the discussion. Though the choice was not without irony as sometimes relationships are badly affected by this disease, is it possible not to wiggle whatever will move when they are playing? So here's to Queen for their many layered uplifting music and to Ailsa for working her very own 'kind of magic' - Thank you.
Agreed x
Haven't listened to the programme yet. But, blimey, what a joke. I know it was about RA and I have PsA, even so ....... first showed symptoms at 16, and in retrospect PsA started affecting me badly when I was in my early 50s. Finally diagnosed at 56. Sounds like Ailsa did a sterling job and cannot understand why they had to interview a doctor who from the sounds of it is living in la-la land.
Yes , I sort of agree to an extend the doc was trying to be positive and upbeat but sometimes the reality in the nhs is not the patients actual perception. Eg the patient is at the centre of care and a member of the team! I genuinely believed this when I worked as a nurse but my patient perception is they try very hard with limited resources and staff but often miss out what I think.
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