New from the UK

[freakyschizogirl]

oh i've had so much trouble today! (try and stay with me)

So my Respiratory consultant has written to my Rheumy for a referral (i have a copy of the letter) date 24th Aug.
I rang Rheumy secretary to ask when my appointment was because i was expecting a letter by now...She says she has no referral and i've never seen this rheumy (tho i saw him twice in 2007, its not on her records so it never happened is what she told me)
She says ring GP to get a referral.
Rang GP they have a copy of the letter but it says my Resp consultant has already done a referral to the rheumy.
So ring back Rheumy sec..she says its not on her computer...it may be with central appointments and to ring them.
So i ring central appointments..they say they have no knowledge and to ring my resp consultants sec.
So i do...she says she knows they all have a copy of the letter cos she sent it...and the referral is on her computer screen. So she says she will WALK over to the Rheumy's sec and GIVE her the referral.

What a bloody mess!
Noramlly i would defend the NHS but i'm so angry at the way i continue to be treated by these people...especially secretaries.

SO hopefully my referral is now going through but there is a 12 week waiting list.

[Jack]

Sounds like the Health Authority need a good shake up in your area!
I've never had anything but help from consultant's secretaries and have never had to wait more than a few weeks for an appointment with a new department. I'm not sure what your current state of health is, but if it is showing signs of being unstable, you should get your GP or the Respiratory consultant to send a "hurry up" letter stating the urgency. I have managed to get to see new consultants within days using this method.

[Geoff]

OMG Freaky thats going too far.
As a fellow WG sufferer living in Essex I am appalled at the lack of attention/treatment you are receiving. I have heard about the 'Post Code' lottery when it comes to the NHS but I live about 25 miles from you and could not have received a more different quality of treatment compared to you. 'Fortunantely' when I was admitted into Colchester and told 'We think you have WG and have to tell you its fatal' they followed this up by transferring me immediately to Addenbrookes in Cambridge under Dr Jayne. I am impressed as to your resolve and action and would urge you to try and get a referral from your GP to Addenbrookes. Yes it takes over an hour and a half to get there but they are simply amazing. If I have the slightest 'twinge, ache or pain I can call them up and they will see me the same day in some cases! Even the receptionists/ secretaries are on the ball. I hope you can take my 'good fortune' with regards to my level of treatment and not be downhearted but use it to kick ass and make people aware of your condition. Things can improve but you have to get the right medical people on board - and QUICKLY. Keep in touch. I work in Brentwood if you need to chat.

[Sangye]

Freaky, don't think that's unique to the NHS. I go through things like that on a regular basis with my medical care here. It's constant and involves anything from getting a prescription approved to appointments, to insurance coverage, to labwork, etc.... Chasing this stuff down occupies a large part of my time. It's not right that anyone should have to put up with this sort of thing, especially when sick. I hope it gets sorted out for you today!

[eileenv]

Hi, The same thing happened to me i had urgent refferal from the rheumatologist to the ent i waited three weeks when i never heard i phoned appointments and they had no refferal. To cut a long story short in the the rheumy sec faxed it through while the ent sec was waiting the other end!!. It took a week of phoning to get this far and i've still got to wait till oct7th till i can have the biopsy bearing in mind that this referal was made back in the middle of July.

[eileenv]

Hi Geoff, I live in Romford ears went up when you mentioned Brentwood!!, does Addenbrookes have a vasculitis center?.

[Jack]

I believe Addenbrookes is a major centre for vasculitis research which seems to be tied in with the renal department in the same way that it is at Birmingham.

[eileenv]

Thank you Jack, i think St Thomases in London has a vasculitis center as well, i was wondering even if my biopsy comes back negative that i will still asked to be reffered to a vasculitis center.

[freakyschizogirl]

Hi all, thanks for your replies...especially those of you in Essex

I knew it would involve a chase. Its just the secretaries at Herts and Essex hosp...especially the Rheumy's sec is really rude...she's been rude to my mum too.

I dont want to start at herts and essex hosp or even PAH which is my local. I do wanna go to the experts and i told my ENT i dont care how far i have to travel. Thank god my Resp Surgeon is on the ball! And his secretary was so helpful, i cant fault her...btw my resp surgeon is American and i have to say he's treated me well and seems to do good by me.

I'll give this Rheumy one chance...i dont think he has dealt with a lot of WG cases before...altho now i think my mum has an appointment with him next week so i will get her to ask!! Save me time chasing up appointments.

Its just such a farce and it really shouldnt be.

I never thought i was under some postcode lottery...My mum got funding for her Arthritis meds. Its just secretaries. Pissy secretaries

[Geoff]

Hi Eileen,
Jack as ever is a mine of information and spot on with his comments. When I was admitted to addebrookes over 2 years ago, most of the guys on the ward were renal failures and waiting for transplants etc. I did get to meet another WG patient one day at the clinic and compare notes. Its fascinating to chat or 'overhear' other people talking about the wide range of vasculitis disorders. By the way I was down at Romford dog track on Wednesday, a good night out as I backed the winner of the big race, just broke even on the night!