Either our government are total knob heads or Belles surgeon is using a kop out. You figure it out, I'm too blinded by rage to decide.
Yest, both Belle and I attended a crucial appointment with an Orth Surg at one of the North's best Pead hospitals - Alderhey. This was a follow up from an appointment in Jan 2006. Love waiting lists, we do. We had been desperately waiting for this appointment because not only will it speed up her investigations again but it will also put paid to the DLA hell Belle is going through. So we pitch up. We wait in a hot hospital (even though its very warm outside) therefore dreading catching a nasty superbug or horrific germs that breed in that heat. I get so agitated in waiting rooms in summer, I'd dearly wait outside. Belle had her head down on the DS (she does this as a distraction - we know this for sure). Time came for us to go and see her saviour, the guy who is going to fix her, our guru. He greets us with a sunny hello and no white coat. I like his masked attempt at making belle feel that he wasn't the usual sinister white-coat-man. And this was the convo:
Surgeon: So how can I help?
Me, thinking What, don't you know?
I replied: We are here on the follow up from last January.
Surgeon: Aha, you saw my registrar. How did that go?
**Me, thinking Don't you have/read frikkin notes?
I replied: "It went ok although he didn't do what you suggested the May previous (May 2005 I'm talking about)
Surgeon: I haven't seen you before.
Me:Yes you have
Surgeon:No I haven't
Me:YES, you have. I distinctly remember seeing you because you could only spare 5 minutes as it was the end of the day and I distinctly remember you because you look like my cousin Christopher.
He checks notes
Surgeon:I haven't seen you Mrs Wiseman. Aaaaaaaah, wait. I have.
He Looks at Ellie who has her head down on the DS - completely ignoring the shenanigans.
Surgeon:So what can we do for you
**Me, thinking:Is this guy taking the frikkin piss or what? Do I magically refer my daughter to hospital in hope that he will just make up a diagnosis and we can get on with our lives? **sigh**
So I run the spiel of what happened the first time we saw him in May 2005, the follow up in Jan 2006 and the wait between.
Surgeon:You know Mrs Wiseman, glancing at Ellie between breaths, I can't take responsibility for the time delays between appointments. I am assigned to tertiary appointments from the government and can only deal with referrals from GP's. You are a follow up - you do realise that doesn't count.
Me, thinking: Ok arse hole, you can take your lack of interest out on me if you like but not on Ellie or my time and certainly Im not going to act upon your info and care for your bruised ego cos you failed to read up about Belle before the apointment or the fact you get paid in excess of £80,000 a year to act like Im here for a laugh and a joke. You may be clever, you may be the best in your field but surely you have admin people and registrars that can fill you in before I traipse 20 miles with a child to come and fulfil an appointment which I have ultimately paid for my whole working life for.
I replied: Well lets just start again please. Do you realise that we have been to 14 hospitals and through 4 professors, 12 specialists, umpteen tests but to no avail. Belle currently has a dietician, an OT, a physio and an orthoptic who do their bit and I have had to co-oridinate these events single handedly, live with the consequences of these trials and decisions, seen my child be cut, injected, tested, hurt, in pain, cry, break her heart. In a perfect world, do you not think that these individuals, sat in one room would bounce ideas off each other and somebody come up with a solution. You can see she isnt like your average 11 year old. I want the best for my daughter, I really do. I want to show her that I did everything I could so that in 10 years time nobody can turn around and say "well, if you had of done such and such when she was 11 years old, she wouldnt be like this now". So I do what I do for her and not for hell of it. If you can't do anything for her, tell me now so we can try a different route.
How I remained calm, composed and not break into tears (prolly for the first time ever!) I dont know but it worked. It really worked.
So, the surgeon examines belles feet with his registrar and he talks about her twisted feet and toes and sensitivity and all these words I cant recall. This guy is all about bones and for years we have been told she is all about muscle. I cant shake this confusement but Im relishing the fact something might happen. Belle is crying in pain but I mask it out, I have to. They are going to work their magic on her. I look at her and wink and blow her kisses as I summon all my strength not to cry. I am defiant but really Im jelly.
Surgeon: Ok this is what we are going to do (after sifting more notes). we are going to have her work the Gait Lab. Im not going to perform surgery (which is what he said in may 2005 - to break her feet and reset them - EEEEEEW). Come back in 12 weeks and we will take it from there.
**GAIT LAB: a place where they attach electrodes to part of the body (in this case her feet) and get her to walk on a special runway. cameras pick up her walking ability and run data through a computer to asses her weak point and possible cause for her disability. COOL!
So there you go. If you dont frikkin ask you dont get. What is that all about?. Dont doctors simply offer the next available solution anymore? Do you always have to fight for it? Shall I stab myself in the chest to get my stomach ulcer sorted out in the hurry I need rather than the - lets wiait and see what happens. Cos if you are not dying within this health service, you aint nothing. I swear. saying that I am grateful we have a health service to a certain extent but I didnt realise that you had to bust a gut to get what you think your child needs. And Im no expert.
Anyway - seeing as its a new day, here is an overlay for you. You can get her HERE
Im outta here - got so mcu journalling to do about this bizarre NHS treatment which should