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Vasculitis UK
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Found out why no referral - computer lost it!

I've been waiting for an urgent referral since early September, i.e. nearly 4 months ago. Cyclophosphamide and other treatments aren't working enough for me, so I need to try a virtually-last-chance experimental biologic therapy, which only a rheumatologist can approve. But I've had no appointment, though the consultant had expected me to be seen fast.

Found out today why, when I saw my usual consultant at short notice: the NHS computer system lost my referral from early September. So it never reached the rheumatologist, and I was never given an appointment.

An urgent re-referral request is going through today, including the note that it should have been received in early September, is very urgent, and I am deteriorating and need to be seen fast. The consultant expects me to be seen very quickly.

The consultant was furious about the computer system letting us down, and hugely apologetic. I took it very well. Before I studied history (to PhD level) I was a computer science graduate, and learned about how difficult it is to remove bugs from large complex systems, often publicly funded ones that are life-threatening if they go wrong, no matter how much money you throw at them, or how much testing is done.

And at least now we know what has gone wrong steps can be taken to rectify the situation and get me that urgent referral, at long last.

I'm also doing a lot better now than a week ago, since my steroids went up after discussion with GP to 20mg. They're to stay high until I see the rheumatologist. Just hoping they don't need to go any higher. That is in addition to a cocktail of Azathioprine, Mycophenolate Mofetil, Methotrexate, and many other drugs to cope with side-effects and symptoms from my cerebral vasculitis and the brain damage it causes.

11 Replies

Well Viv, I'm glad that you are feeling a little better and so glad that you are now, hopefully, going to be seen urgently.

Maybe this is a lesson to all of us. If something is promised as being urgent, and nothing happens within a shortish space of time, kick up the biggest b....y fuss and become a pain in someone's backside until they get it sorted.

Let's hope 2013 is the start of a much better drug regime for you and much better health - like the advert goes "you deserve it".



Thanks. The sad thing is I was kicking up a fuss, and the consultant was chasing it with the rheumatologist, speaking to him in person to accelerate things. But then because it never came out of the computer system, well, it never happened.


So pleased you are feeling a little better.. :-) When people phone us and we suggest a referral..John always tells everyone to make sure the referral has been sent by the GP and always follow the referral up.. both Birmingham and Addenbrookes will aknowledge referrals within 2 weeks... As Patricia says..it is best to keep tabs on these things...

What really annoys me is when people submit forms and paper work to ATOS and ring up to follow up the Assessment or Appeal and they are told all their paper work is lost in the post..... it is sometimes so easy to blame the post when I have a sneaky feeling that the ATOS admin team are so inundated with paper work it becomes "mislaid"..... :-(


My referral was from one consultant to another one, so internal to the hospital. I've no doubt it was done, but that's why the same consultant was so shocked this morning to see it had vanished off the computer system. And he had been chasing verbally ...

I agree with you about ATOS and forms. When I claimed (unsuccessfully, pre proper diagnosis) for DLA I sent all my paperwork by special delivery, to guarantee it got there and I knew it got there. We didn't use recorded, because based on past experience that is the kiss of death delivery-wise, and not nearly so reliable.


I was always taught that it's actually not the fault of the computer, it's a human being that tells the computer what to do. Someone must have been at fault rather than the computer!!


Trouble is that's not my experience as a computer science graduate. Computer software is very complex and has bugs in it, so can often behave uncontrollably.

In this case I'm confident that something went wrong with the software.

Whatever happened it can now be fixed :)


cyclo didn't work for me and neither did aziathorpin, fortunately the consultlant/(the best anyone could hope for) that i had, stuck with me and now a yearly dose of rutiximab does the trick. altthough a warning if any appointment hasn't came through, phone and check, you are not being a pest, just looking after your body. my last letter came for a mri scan the day after the appointment - yes a day late,(it took tnt 3 weeks to deliver it) if i hadn't phoned i would have missed it


Hi Viv, I have to agree with Nadine...the glitch was 'human error'. I too had a referral which took some time and as I was running out of cell-cept rang the previous Prof's secretary who apologised and said the referral had never been sent (the excuse was the prof's dictaphone went on the blink!!!) but what happened to the so called written notes etc. I felt so down I almost came off all medication thinking 'they don't care'...but I got an appt within 2 weeks and am happy now. Viv I was married to a consummate computer expert (divorced) and he designs whole systems (hardware/software he works in America & gets big bucks) and I have spoken to him and he has told me ....it is the inputter who got it wrong otherwise the whole system would break down. I am so glad you will be seen soon and despite you being an 'expert' in software....just don't trust it. Phone up sooner next time. Good Luck x


Thanks Sheila. And Ken too. Frustrating thing is I was querying this right from the very start. And have been querying it all the way through the last 4 months. It's only just now it's been discovered that - whatever the cause - the referral wasn't in the system.

I wish Rituximab was a viable option for me, but it isn't a proven - or even generally good - treatment for my form of (non-ANCA) vasculitis. Hence us looking at something different.

But hopefully soon I will have my appointment :)


Oh Viv, I wish I could help you but I was helped with my WG by Susan & John Mills who pointed me in the right direction to a dedicated Vasculitis Team....first of all Birmingham (who were absolutely caring) then luckily Manchester who are nearer to my home. As I said it took a bit of getting there but I so wish I had rung the other team sooner so as to feel looked after

me as Birmingham (they are the experts) but I am happy with my Docs in Manchester. I have a high c-anca but am on cell-cept (azothiaprine nearly killed me..not joking) and so far apart from being depressed and joint pain and sort of OK. Sorry something got mixed up there but take care and "Get Better"


How many times have we heard that excuse? Does the NHS system not have a backup facility? - probably more likely 'operator error'!

I think I was right to insist that the NHS keep my paper records.


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