aaaaaaaaaaaaaaaggggggggggggghhhhhhhhhhhh

Not sure how coherent this will be.

Facing the utter madness of the NHS waiting lists. And feeling like screaming.

I contacted Oxford today just to check my letter had been received and to ask about the waiting list. We saw Mr N. on 1st December. J was meant to go on the waiting list as urgent then. His secretary (Ms A) just told me that she only filled out the form last week (6th January). Why????

Apparently Mr N is "on call" at the moment (by which I presume they mean he's doing his private work) and has not yet seen my letter, but it is in his in tray.

His secretary has requested the MRI from Birmingham Children's Hospital she said (goodness knows when and who knows when they'll send it...).

I asked about the waiting list and Mr N's secretary gave me the name and number of the John Radcliffe booking officer (Ms R).

Ms R told me:
1. They have a new computer system and are having problems putting patients on it.
2. The waiting list is 26 weeks, though urgent cases are about 8 weeks.
3. She might be able to slip J in on 21 March (as a provisional date) and took J's details.
4. Cancellations are v v v v v rare so it is most unlikely he'll get an earlier date, though she said she would let me know.
5. There are 5 consultants vying for room in the 2 operating days per week between them (Tues and Wed). There is only room for one child to be operated on on any one day (the ops last for 8 hours, so only one is scheduled).
6. They only do plaster casts on a Wed.
7. If there's an 8 hr child op on a Wed, there won't be any plaster casting that day.
8. They also are an A & E place, so they don't know what's coming in and it can be cancelled.
9. She recommended that I phone Mr N's secretary back and ask her to fax over the booking form so Ms R can see what's written on it.

So I dutifully ring Ms A back. She no longer has the form. She has sent it to Ms W at the Nuffield. She says she'll ring Ms W, but I ask for her number so I can do it myself.

I ring Ms W. She hasn't got the form, but has got his notes. After much rummaging she finds she has got the form. Mr N's secretary used J's middle name as his surname...

(I feel like headbanging the table repeatedly now).

She will fax the form to Ms R at John Radcliffe.

+++++++++++++++++++++++++++++++++++++++++++++++++++++

The bottom line is that we are in limbo at Birmingham and possibly on a waiting list for Oxford. But it's a very long waiting list and although Mr N said he'd put to cast "soon" - does that translate as "urgent" on the booking form??????

The irony is that Mr N's secretary was very clear in my first phone call with her today that it's all in hand and that it's not my role to be phoning/chasing etc.

aaaaaaaaaaaaaaaaaaggggggggggggggggggghhhhhhhhhhhh

Meanwhile we don't know whether the curves are getting worse.

I've just rung Mr M's secretary (J's current consultant) to see whether he can have an x-ray asap, but her phone's on voicemail. So I rang the plaster room and Jo kindly said she'd go over to see Mr M's secretary tomorrow and ring me back. I specifically asked for details about the next x-ray date and asked about my Dec letter as I still haven't heard back about my query regarding spina bifida and J's notes (see earlier blog). Not urgent in the grand scheme of things, but I hope I will hear back at some stage.

WHAT CAN I DO TO SPEED THINGS UP?

Mad ideas come to mind like going to the US for treatment at one of the renowned Mehta casting places (eg a Shriner hospital). But how you get in their system, how much it'd all cost, how we'd manage travel etc etc...

But would it be worth it? At least get that initial cast on J.

We don't even know if 21 March is definite. What if it's cancelled and then we're at the back of the waiting list again????????

These are the things that keep me from sleeping (May was dreadful when we were facing the Birmingham waiting list).

I hope hope hope that there's a way through this. And that the x-rays don't show deterioration in the meantime! Just 5 degrees worse and Mr N was saying about growth rods.

But proper casting could mean the curves get better - never mind fearing deterioration.

Don't know how to finish this blog. So will just end here.