Is it right that I can't ask for a second opinion without seeing the GP?

[Katymac]

Because I'm a bit

I have to take DD in to the surgery - see I GP I have never seen before - explain the whole palaver (IN FRONT OF DD) in order to get referred to a hospital I don't want to be referred to

Oh & I can't be referred to Moorfields because they 'don't do that'

Maybe I am being silly - I just don't want to have to do it all again

It is really tough, but ime life with a disabled (from whatever cause) child is just that: doing it again. And again. And again. It's awful. Am really sorry you and your dd have to go through this.

I find it helps if I try not to think too much about it, but to prepare carefully what I'm going to say and then switch off my emotions.

I'm going to have to 'adjust' aren't I?

Ho hum research on internet to see what the rules are - then go in demanding requesting what I am entitled to

You stand up for yourself! It's hard work, but I do find it gets slightly less exhausting as you get better at getting what you need out of people. If you can take dd's dad (if applicable) or somebody else to support you, I find that adds a bit of clout (not literally, of course).

No DH would not be an ideal person to take

He suffers from "white coat obedience" if a doctor says stand on 1 leg for a fortnight he will start working out how he will sleep standing up

A lady from a charity has offered to attend the CAF & the hospital to note take for me

The DLA forms are approaching & quite scary

I must be firm - I think I have found a local behavioural optometrist maybe I want a referral to her

lol at your description of your dh; tbh I think both dh and I were a bit like that to start with. But we have toughened up in the last 6 years, and now on our second child that needs fighting for.

the lady from the charity sounds ideal

best of luck with the DLA forms

Thanks - appointment on Tuesday

Poor DD she doesn't know which is worse being talked about in front of her or being sent out the room

She will decided

You are entitled to ask for a second opinion - you existing consultant could refer or you GP.

DD is in secondary now isn't she Katymac? Perhaps she should have the opportunity to explain for herself rather then being sent out or talked about. It may help her feel more in control. From 12 onwards most often the paed HCPs talk directly to the child rather than about them to the parent.

Sorry there hasn't been much improvement.

She doesn't mind explaining about what is happening to her

She hates talking about drs & hospitals & stuff

Thanks though, I'll see what she wants to do

Katy, sorry to hear that your DD is still having problems with her sight. I can't answer your question but I hope that you do get your referral and that some good comes of it.

Thanks Thumbwitch - it is getting harder just now but it will get better

Katy - sorry - I hope my post didn't sound like I thought you were handling things the wrong way. I didn't mean that. I just know from my own experiences with dd that, for her, being the 'driver' in her contact with HCPs helps her to feel more in control of her health issues. There's no right or wrong way.

Good luck on Tuesday.

No it's fine

I am used to the psychologist saying I am doing thing wrong

Who'd be a parent eh?

I still find it very difficult to let dd be in control. I keep having to butt in. We'll be transferred to adult services soon and frankly I'm worried to death because I'll have no say at all then.

Oops meant to put a

Guidance on 'further opinions' from the BMA

"Since April 2008, patients referred by their GPs for most types of planned treatment have been able to choose from any hospital or clinic (from any of the four categories of provider listed above), which offers treatment within NHS cost guidelines and to NHS standards. " From here

write it all out in a letter - hand it to the doctor and ask him/her to read it - put at the top that your daughter does not like this process so you have written it out / say at the top that you want a referral to Moorfields Eye Hospital

Make it brief / note form like

xxx date: yy happened

zz date: xx hospital / yy consultant / abc investigation / def opinion / follow-up

Thanks for that info

It's a good idea baout writing it down - I have it all written down anyway, so I'll just print it off