Got results from FP

Hi Everyone

Hell of a journey there and home, but just got back from seeing FP. A nice juicy 2cm x 7mm max pHPT adnoma had shown up on the (very thorough) US that I had, but nothing at all that could be likened to an adenoma showed up on the Sestamibi/SPECT scan (which he said is what I had).

But not to worry, as he will do the operation anyway - it will just "make it more interesting for them" !!  Perhaps he means a bit more tricksy when he says "interesting", not sure.

The only thing is w-h-e-n he will do the op, and it's not looking like it will be this year. He looked a bit oddly at me when I told him I had brought an overnight bag with me today (his eyes twinkled over the top of his glasses a bit .... oooo er!) and could he just get on with it, but it's looking like next year now, unless I get a cancellation. I even told him I would come in over Christmas if need be, although that probably wasn't a wise move, on reflection.

So there it is - big build up, 10 minute consult, and now a bit deflated, but at least I'm on the list for surgery and he's seen something to take out.

Thanks to Everyone for all your good wishes and hopes for today - they were much appreciated - love and hugs back.

Off now for a coffee in the not-so-Limbo-Land café - you know, the one through the door marked Carry-On-Waiting-Room!

Love from Tigerlily xxxx

Well obviously your adenoma's fairy lights aren't functioning quite yet Tigerlily  You'd think it would show up if it rings the bell for ultrasounds, but it doesn't really matter because you have the official 'Go' for surgery  It's always a bit deflating once you've had the consultation you've been looking ahead to and counting on. You never know, you might get a cancellation, especially on the run up to, or retreat from Christmas and New Year. The goal is there and the end is in sight! Hooray!! 

Love and GBH (just for you!) 

Brigitte xxxx

Great news Tigerlily so pleased for you, like Brigitte says you may get a cancellation, people with colds etc.
It would be a great start to a new year if it was early Jan 2015.
Lots of love n hugs.
Amanda xxxx

Thanks, Brigitte and Amanda!

I first saw FP on 13 August on the NHS. Does anyone know what the NHS guidelines are for the time that can elapse from a first appointment to having an op, if deemed necessary?

Is it 18 weeks, or something? 

All help gratefully received on this!

Love from Tigerlily xxxx

Hi Tigerlily

What a kerfuffle for a ten minute consultation! I'd be willing to bet that Mr P would be tearing his hair out behind the scenes about the dismal NHS admin procedures. I think the medical secretaries work for several consultants at a time and are very likely extremely overworked - no excuses though for not being able to keep the patient notes in good order so that the consultant can actually consult with the patient with a degree of confidence! I can tell you that his private sec isn't much better! Good news though, surgery is imminent and you've moved into the admissions waiting room out of the Limboland cafe....

NHS Choices Patients Rights states that you have the right to commence consultant led treatment within 18 weeks of referral, and by that it means the clock starts ticking when your referral letter is received into the department, not from when you see the consultant for the first time. So if you find out the date your GP sent the referral, add a few days for transit etc that will give you an idea of your wait time.

Jasmine x

PS, how very ungallant of him to not admit you there and then, particularly as you had been extremely proactive and packed an overnight bag on the off chance .....

PPS, if it were me I'd give it a week or two for the update to filter through from FP to his sec then ring her on the premise that you just want to confirm you understood Mr P correctly about the surgical arrangements, then you can slip it in to her that you're up for a cancellation spot should one come up, just so she's aware and YOU know she's aware, and she might be able to give you a rough idea on wait times?

It is 18 weeks but I waited 7 months as they were so busy !!

Thanks so much, Jasmine and Nelly, that is so useful.

Although I saw FP privately to get the ball rolling, my GP then sent his referral letter back to FP on 30 June to refer me into the NHS system.
 
I saw FP on 13 August at Hammersmith on the NHS for the first time.
Scans were arranged for 16 Oct (just after we came back from holiday).
And a very useful appointment date of 29 October was set up for me to see him for the results of the scans straight afterwards. I thought this was all very (too!) convenient.
 
When I got back from holiday in early October, there was a letter on the mat telling me that my appointment on 29 October was cancelled "due to clinic closure", and I was being given a new date of 2.30pm on Christmas Eve.
 
When I said I wasn't happy with that appointment date (and didn't think that FP would be either), the appointments line supervisor changed it to 25 November.
 
So from the GP's referral letter date of 30 June, it was already 4 months and a little over 3 weeks , so 19 weeks at least, from 30 June to 25 November. Not that I think I will be "done" anytime soon. The NHS appointments team seem to have strung it out rather though by putting that 29 Oct appointment back another month.

That's good advice about what to do next, Jasmine - thanks so much.

Love from Tigerlily xxxx

PS.  See new post about Lymph Glands that complicates the picture somewhat!!

The 18 weeks run from when your surgeon agrees to surgery and puts you on his surgical list, not from referral date, so you may only have gone on the surgical list yesterday if that is when surgery was agreed.

I first saw my surgeon in March and he agreed to surgery so I went on the list at that appt, didn't get the surgery appt till Oct.

Luckily I have a letter from FP to my GP referring to the NHS clinic appointment on 13 August 2014 stating:

"    I have therefore agreed to her undergoing PTH surgery under my care. I have listed her for surgery and in the interim I have arranged for her some localisation studies.    "

Tigerlily

I'm not able for some reason to copy and paste links to the forum but if you google NHS Constitution waiting times it will take you to the link for the NHS Choices page on the Rights and Pledges of the Constitution where it advises how the waiting time is calculated from the date the referral letter is received by the hospital department. Clearly they've missed that deadline with you Tigerlily, and I suspect missed deadlines are probably quite common place seeing as Nelly waited so long, but that would spur me on even more to ring and ask what their particular hospital's position is with regard to the Rights and Pledges of the Constitution on waiting times - but that's just me with my belligerent hat on!

Jasmine x

Thanks, Jasmine - so grateful, as always - I'll check it out.

Love from Tigerlily xxxx

Tigerlily, I'm so sorry about your big disappointment.  I know that has to hurt, but keep your chin up; you've got the diagnosis and a positive sighting of the adenoma.  You're a lot farther ahead than many!   That probably isn't much consolation though, is it?     The new year is not that far off, but when you are suffering so badly it sure seems like it is, doesn't it?     We will all try to keep you cheered up and smiling until the big day arrives!     Stay strong!   It's almost over!!

Audrey

Thanks, Audrey - you are right, of course, the New Year isn't that far away. If I had a date to aim at I would feel better about it. Perhaps something will come in the post next week.

Chins up, as we say!  Love from Tigerlily xxxx  

Fingers X'd for that letter to land on your doormat this week.
Love Amanda xxxx

Thanks, Amanda - I do hope so!
Love and Hugs and Cats from Tigerlily xxxx

Tigerlily  Sorry I have been so busy lately. but I have been trying to keep up with everyones post. I hope you get your letter soon, and the bad boy adenoma will be gone. Hugs Kathi

Oh, thanks, Kathi - and also for the Cats!
Love and Hugs from Tigerlily xxxx