View Full Version : About my Daughter
Round The Twist
6th January 2007, 02:10 PM
That about sums up yesterday for me with regards to my DD.
Where to start.....well when we got there, I was given 1 form and sent to x-ray, so I told Dr (Who I'd never met before) that DD was due to be x-rayed aswell, it was on my notes.
He went to check, came back asked if she had a hospital number, I said 'no' cos she hasn't, he said 'ok well I'll have to see how I can get her into the system, she needs stickers for her forms and x-rays'
He dissapears, comes back with Mr Harrison (My surgeon) who says 'Sorry but my well-meaning ex-colleague Mr Masterson has mis-informed you, Ciara cannot have x-rays without your local PCT's permission as they cost £250 each (!) and they will come down on me like a ton of bricks if I send her for an x-ray without their pemission, all I can do is take a look at her myself, and write to your PCT and get referral for x-rays'
:nut: :nut: :nut: :nut:
All this time...she has now been seen by 3 different Drs at RNOH who have all said the same 'Oh yes, she does have a small curve' I first noticed the curve in July, I have no way of knowing if it is or has progressed and will now have to wait even longer to find out whats going on! BTW Mr Harrison - who said he would look at Ciara didn't, it was the Dr who looked at me also!!!
I think I am maddest at Mr Masterson, he MUST have known, or SHOULD have known that you can't just bung someone in for x-rays without all the relavent paperwork, I'm so annoyed because I mentioned all this to so many people at the hospital who have all said she would be seen and x-rayed at my first follow-up check-up after my surgery.
She also missed a day at school more or less for nothing, although while we were in London I asked Ciara if she would like to go to Covent Garden shopping or the British Museum to see the Mummies, she picked the Museum, which was cool with me, my fave exhibition there ;-)
I think the only good thing that came out of yesterday was that Ciara was allowed to come into x-ray and stand behind the screen to watch me being x-rayed because she was scared to have x-rays herself, the radiograher was very nice and kind to her and now she's not afraid to have her own x-rays :-)
Well thats about it guys,
From a rather frustrated Kat x
6th January 2007, 11:19 PM
You must be so FRUSTRATED :nut:
All that waiting and psyching yourself up for nothing. I agree entirely, someone must have realised that nothing could be done without your daughter first being 'in the system'.
Still, at least she's no longer worried about having the x-rays done when her time comes, that was very understanding of the radiographer to let her safely observe you having yours done. And a trip to the museum too, not too bad an outcome for your daughter but flippin' annoying for you!
Hope you can get her referred quickly.
Round The Twist
7th January 2007, 12:02 AM
I have been talking to my MIL today and saying how annoyed I was about yesterday, as I was talking it got me thinking.....I know for a fact that Mr Harrison is booking appointments for May 2007 at the moment, which means if she got referred right now she still wouldn't be seen till then.
We have to wait for all the paper work and 'red tape' to be sorted by then it'll probably June or July before she is seen! That will be a whole year since the curve was first noticed and personally I think that stinks, soooooo I think we may be going private....I have to see if I can raise the money and find out if it will get her seen any quicker first though.
If anyone has any tips on getting a private referral I'd be grateful :-)
7th January 2007, 12:04 AM
am sorry 2 hear that kat but there right they cant bend da rules huni or theyed get it
love in huggs 2 dd
7th January 2007, 12:18 AM
Wow i'm so sorry to read this post Kat you must be up the wall with frustration. I hope you can sort things out without too much trouble and you don't need to go to the expense of having to go private.
I don't know what other advice i can give other than give em hell ring every day and they may become so sick of you phoning them that you get a leg up the lists.
7th January 2007, 12:23 AM
Well, I don't have any personal experience of private consultations, but from what I can gather it does seem to speed things up somewhat. The really annoying thing is that you'll probably end up seeing the same surgeon, but paying for the privilege! Still, I must admit I would also consider going down that route if it was my child as I think once you've had a private consultation you can often get seen more quickly on the NHS - it stinks, but that's just the way it is. I'd say, save up your pennies and go for it!
7th January 2007, 11:51 AM
Is your GP a helpful one? As far as I am aware, GPs are entitled to order xrays if they feel they're needed - they generally don't like to, but a lot of years ago my GP ordered an xray of my hands because they were painful, and in the much more recent past a couple of people I have suggested to ask their GP to order the necessary xrays to save them the cost have had them agree to it, so if your GP is friendly and helpful I'd suggest asking him/her to order full length standing xrays (either 3ft cartridge, or 2 small xrays each time in order to be sure of showing the full spine), one back-to front view and one side view, with the request being that they're either given to you (supposedly to take to the surgery) or the GP requesting them to be sent to the surgery with the results. They could then be handed over to you to take to a private appointment. As I say though, a lot of GPs may be either unwilling for a lot of reasons such as feeling they don't have the time, but it has to be worth asking.
As far as getting an appointment goes, it should be as simple as asking your GP for a referral to a specific surgeon, and then ringing his private appointments secretary (the NHS secretary should be able to give you this if it's a different person) and asking to arrange an appointment with the guarantee that the letter from the GP is on it's way and will be there by the time you're seen (as this will be at least a couple of weeks even going private).
I would suggest ringing Mr Harrison's secretary and asking if there is anything else that can be done - another possibility (unlikely, but worth a thought perhaps) is that if your GP writes up an urgent referral, perhaps if need be (if policy would require it to speed up action for example) telephoning the request through as well, would it be possible for him to write up the request for your daughter to have the xrays the moment she hits the system? It could be mailed to you for you to pop down at any point to xray at Stanmore then, and perhaps he could assess the xrays even without her present? I don't have a clue if they'd go for something like this, but make a big deal out of the way they've jerked you around and they may be more accommodating. Even if she cannot see the surgeon that she'll eventually be under for her first appointment, at this stage even just seeing a registrar and getting a measurement of the curves would be helpful.
Only other thought I've got is that I think Osteopaths at least can order xrays if needed, but again have no idea how much this costs, but could be worth a thought to get them done quickly and also perhaps more cheaply than by getting them done privately at Stanmore.
I really can't believe that it never occurred to them that there would be a problem!! It would not have taken much to ensure that your GP sent a referral letter in time for her to be in the system when you went along. It's absolutely infuriating!
One last other thought before I go - perhaps try getting her referred to Great Ormond Street instead? I'm thinking here of a couple of members who seldom post these days, Chrissie and her daughter Sarah. Sarah was found to have a very significant curve and put on a ridiculous waiting list for surgery, with no brace or support, and when her parents couldn't get it hurried up despite the size of the curve, they got her referred to GOSH who took one look and immediately put her on a *short* waiting list for surgery and were nothing but helpful throughout. Perhaps you could get similar speed out of them? Could be well worth giving them a ring to see if you can talk it through with someone :-)
Round The Twist
7th January 2007, 12:51 PM
Titch - you are a genius :squeeze:
7th January 2007, 12:59 PM
I was going to say exactly what titch is suggesting, just try and see how much you can get out of your GP. he/she could even ring mr harrison to coordinate the making and reading of x-rays. try to push the urgent referral route; possible reasons; you are worried about rapid progression because of your own history, so it needs catching early and also quote the extreme stress you are under because of it all (whether you are or not)
also, other spinal surgeons in the same hospital or elsewhere might have shorter waiting times
7th January 2007, 06:42 PM
How annoying! I agree, Mr Masterson should have known better. I did think it odd that you could just get her xrayed at your appointment, because it's like jumping the queue, but I just figured that you'd got lucky and had a v nice doctor. You might want to check with your GP that if you are referred by him/her to have xrays that they will allow you to then have them. I don't know where patients stand in taking xrays, but it'll be a further frustration if they don't let you take the xrays to another hospital for a private consult. Unless of course the suggestion was to have the xrays taken at Stanmore.
Sorry the appointment was so frustrating :squeeze:
8th January 2007, 02:22 PM
if you still want info on going private, i'm your girl :-)
my mum first spotted my curve when i was almost 14 and took me to our GP, who referred me immediately to stanmore. so this was early march 2001 and an appointment came through for an initial consultation at the RNOH for... 9th july 2001.
mum was having none of that (not to mention i was due to be out of the country on that day) and we were very lucky at the time to have private medical cover through dad's work so she booked an appointment privately. we didn't even have to wait two weeks for that consult and by july 9th i had been xrayed 3 times, cast and received my brace. just goes to show what can be done.
the very least an initial private consult will do is means you'll skip the first lot of waiting. as in, you'll have a consultation and that will get you put on the next list for treatment/consultation that bit sooner. good luck. if you want to know anything else, just ask :-)
9th January 2007, 02:33 PM
The NHS is a stupid and fustrating system!!! All this referring and re-referring, its so not necessary! I am sorry the appointment didn't go as you hoped! :squeeze:
Give the GP a go. My GP was able to refer me to get x-rays in my local hospital when my scoliosis was first spotted in March 2004!!
I hope you get somewhere. :squeeze:
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