This is supposed to be a light-hearted blog about my new gluten-free adventures. This story is related to being Coeliac though, and I think it might be cathartic for me to write up the almost-comedy (if it wasn't reducing me to tears) experience I've had trying to get an NHS referral.
So the first test for Coeliacs disease is a blood test to look for the antibody that reacts to gluten. I had this test done on July 17th. I got positive results the following week and on July 15th spoke to my GP on the phone, wherein she explained that I needed an endoscopy. As going GF for life is a fairly serious move it's obviously best to be 100% sure, and a biopsy of the small intestine will usually confirm damage caused by the antibodies. The GP explained that as with the blood test, I shouldn't cut out gluten until I had this additional test, in order to reduce the risk of a false negative. She said three weeks or so to get an endoscopy. No problem.
A week or so later I get my referral letter, and NGFH, knowing I'm keen to get on with it, phones me at work with the details. I have a choice of four hospitals (insert "Your Freedom To Choose Means A Lot To Us, Important Patient Type" or other similarly not-the-point slightly patronising sentiment) but the only one I can realistically get to is the John Radcliffe in Oxford, so I phone them. First surprise: earliest appointment is October 21st. This is in late July, so a three month wait. Three months of not being able to cut out gluten and free myself from the symptoms that are dragging me down. Of course they're not life-threatening, but if I can stop being bloated, exhausted, borderline anaemic, etc etc then I'd quite like to get on with it.
A few days later in a flash of inspiration I phone round the other three hospitals, and discover that Swindon's wait time is only six weeks, and West Berks even less. Hurrah. So I cancel my appt at the JR. Second surprise: canceling doesn't put me back into the Choose & Book system, it cancels my referral outright. I need to talk to the GP again and get another referral. Luckily a phone appt will suffice, so on 4th August I speak to the GP and explain, mentioning that West Berks has a short waiting list. She says she will re-refer me.
Back to Choose and Book. Phone them on Friday 7th to book new appt directly at West Berks and get told that the earliest appt is... end of October. Explain that I spoke to the gastroenterology dept directly and they said they were clear throughout September. Nope, only October is showing on the system, and in fact only 7th or 14th, neither of which I can make. (Me:"I can't do those dates, I'm away." They: "Well they are the only two on the system." Me: "What, EVER??"). In the course of this extremely frustrating conversation the woman I'm talking to says something that makes me backtrack:
"Hold on, did you just say ROYAL Berks hospital?"
"Yes, that's right. Royal Berks. In Reading"
"Not West Berks?"
"No, that's in Newbury"
"Yes, I know..."
So I've been referred to the wrong hospital. OK, calm down, it's a simple mistake. Back to the GP surgery, explain to grumpy receptionist who implies it's all my fault and I'm rather a nuisance. She writes a note for the doc and tells me to ring back Monday. Call on Monday, am assured by reception that correction was faxed to the "Choices Bureau" the previous Friday.
(Little side note here: the Choose and Book system hasn't been rolled out to all hospitals or surgeries yet. So while many GPs will print your referral complete with ref number before you leave the doctors office, thus ensuring you are in the system, mine has a secretary send a fax to somewhere in Banbury where it's put into the system and they phone them the next day to confirm that all the faxes have been received. Woohoo for technology).
Friday August 14th and after a few calm-inducing days of not being on the phone to some department of the NHS, I work up the courage to try again. I phone Choose and Book. They tell me I have an appt booked at the JR (which also isn't on the C&B computer system yet, so the fact that they canceled me won't tie back up with the central C&B appointments. Ever.), and also an un-booked referral for the Royal Berks. Nothing for West Berks. Back to GP, and this time I speak to the secretary, who tells me she faxed off the letter on the 7th, but she'll do it again now to be sure.
Monday 10th August, phone Choose and Book. No sign of West Berks appt. Back to GP. This time the secretary takes my mobile number ("This has been going on quite a while now hasn't it?") and promises to sort it out. And she does: 10 mins later she phones back with a reference number for my referral to West Berks. Hurrah. Finally.
So I've just been on to the Choose and Book website with my lovely new shiny correct reference number. Earliest appointment at West Berks: 23rd October.
Sob.
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