to tell the GP what I want; rather than asking her what can she do?

[Katymac]

There is tonnes of back story to this

But basically DD has gone blind (12 weeks ago) & they won't give her a MRI/CT Scans, do a neural net (whatever that is) or any blood tests

A behavioural ophthalmologist has faxed the GP to arrange these tests; the GP won't

So do I go in telling them what I want or is there a better way?

I rarely (if ever) do AIBU - so be gentle with me; I really am at the end of my patience

Moorfields does have an A & E - I went there when i had an ocular migraine (after faffing around at general a & E)

They do have an A&E - but they have said DD is neither an accident nor an emergency

GOSH used to have a private wing.

Could you post a link to a previous thread with some back story, if possible? I could run it by my tame GP (DH) when he gets in since he might be well placed to explain to some extent what your GP is doing / thinking ... or indeed well placed to say that your GP is bang out of order.

Bear in mind that most GPs cannot refer directly for MRI, CT etc., that protocols vary by area, and that if you are already in the secondary care 'system' that it may be that your GP has their hands tied by this (hence, I think, the fact that they have offered you a second opinion within another branch of secondary care i.e. GOSH). Also bear in mind that if the 'behavioural optometrist' (sorry if I've got their title wrong!) is not part of the NHS system and does not hold a medical degree, the GP is unlikely to be in a position to understand whether or not their expertise and recommendations hold water.

I hope that none of the above is unhelpful and I am sorry that you're facing such a horrible situation - I really hope that you can get some sympathetic help and a reassuring diagnosis soon. Also sorry if I've misunderstood any of the situation already and my advice seems inappropriate or insensitive - as mentioned, I wish I knew more of the backstory.

Would it be OK to email you some stuff (rather than post it here)? - or CAT you?

I appreciate any help tbh

here

here

here

here

here

here

These are some of them

Yes, by all means drop me an e-mail. E c o o k 23 @ h o t m a i l . c o . u k without all of the spaces (but with the underscores). I do subscribe to CAT but find it takes ages. Please post here to tell me if you can't get the address to work!

I sent it - Thanks

Can i suggest asking for an urgent referral to an Orthoptist - Orthoptists specialise in testing childrens eyes and also work v closely with ophthalmology so if they suspect something worrying they can sometimes speed up referral to the ophthalmology consultant.

not sure about the rest of uk but in N Ireland optometrists can refer directly to Orthoptists at your nearest hospital.

Is your dd vv upset or does this sight problem flare up when she is anxious or stressed?

I think we saw an Othoptist at the hospital

She is quite pragmatic about it - she generally deals with stress quite calmly (she is her Daddy's daughter not necessarily her mums).

It varies with light levels, how tired she is & the time of day (I think)

Hi sorry havent read all back threads, all sounds really strange usually ophthalmologist would arrange follow up tests themselves - scans blood tests etc... maybe check with hospital who she definitely saw and ask to be seen again because problem has not gone away/got worse

We have a 2 month follow up appointment in June

Just to clarify for people who are confused. An optometrist is not the same as an ophthalmologist. I am a behavioural optometrist but I am in Ireland where the situation is not the same for us as in the UK. AFAIK, my colleagues in the UK can't refer directly to an ophthalmologist but must go through the GP. Here in the Rep. of Ireland we can refer directly to an ophthalmologist but not to an orthoptist, so I am really not sure if the behavioural optom Katymac is seeing can take this route, binjibaghi. Also, we behavioural optometrists are usually very experienced in examining children as most of our patients are children, with either SEN's or squints and tbh, if after examining Katy's dd, the optom feels she needs an MRI she must have good reason.

Katy, I am not 100% sure about this but I think an exception can be made in an emergency? It might be worth asking the optometrist if she could refer to GOSH emergency dept? Also at a time like this, if you do have friends in paediatrics I'm sure they would only be too happy to help. I have spent a lot of time at parties discussing eye conditions!

chipmonkey - are there many behavioural optometrists in Northern Ireland? have v little knowledge about you as a profession maybe because havent come across too many - do you qualify in optometry then do extra courses later or is it its own degree ?

sorry for hijack op

My parent's friend in Paediatrics has retired & my school friend is in infection control - so not 'usable' although they were very happy to be supportive

She can refer to her local hospital but she think GOSH would be better (but if it takes too long she will refer locally)

Is your GP in a group practice? If so can you go to one of the others? (I can't believe how your gp is treating this!)

Well I have my referral to GOSH so I think I will keep out of the surgery

In 6 months time when either DD can see again & she knows I would do anything to try & fix it or she won't & I wasn't fussing

binjibaghi there was one in NI but he retired! I believe his son, who has taken over the practice is now becoming involved in it.

Yes, we qualify as optometrists first and then do further courses. To be a member of BABO, the organisation Katy linked to, you have to do a minimum number of courses and then attend further courses every year to get CET points.

It is really about integrating vision with the other senses, like balance and hearing, improving oculomotor skills and improving visual perception. On a practical level it is similar in many ways to both orthoptics and occupational therapy. We see children for an initial assessment to determine whether we can help and if we can we arrange further sessions of vision therapy.

We are mostly in private practice. I think perhaps one or two in England are involved in NHS work but the HSE down here won't even cover routine optometric assessments for children so I'm not holding my breath waiting for funding from them.

Sorry again for hijack, Katy!

I am fascinated tbh - I have learnt loads

Can I ask (& as this lady is helping me I in no way wish to be rude or dismissive) is this a mainstream type of service or is it more umm 'complimentary'/'alternative'. As I have really no idea & the GP was quite offhand/dismissive about the letter she sent

It is pretty mainstream in the US, Australia and South Africa. Here it is considered to be a bit alternative, I think! Ds1's occupational therapist who came from South Africa was a bit shocked at not finding any behavioural optometrists in Ireland and in fact, it was one of her comments that made me go and check it out and eventually study it. I don't think it would be dissed by all ophthalmologists though. Ds3's opththalmologist suggested I should leave some business cars in his reception area so he can't have been totally against the idea!

Business cards. Business cars would also be nice, if I could afford them!

I did wonder at the GP's reaction people are so blinkered

Katy,
Just wanted to say sent e-mail and I hope it's of some help. Agree with HCTSB that GPs hands probably pretty tied, but also think that exerting polite and informed pressure on person in primary care and beyond into secondary, tertiary etc. (e.g. via liaison with PALS) also a good strategy when, as it would appear, the GPs sense of urgency appears to be at odds with the OPs. Seems like the OP needs to see evidence of joined-up thinking and PALS, despite their faults, often good way of ensuring this.
Of course, it is worth trying to find out from your GP why they do not think it is important to ensure the exclusion of organic pathology in a timely fashion. As stated, GP themselves can't exclude this pathology, but surely most GPs (the one i'm married to at least!) would want to SEE this done, particularly if parent very concerned. Length of time between referral and appointment is obviously contingent on this sense of urgency as well as other variables, therefore is it a variable that the OP might well be able to influence with, as HCTSB says, another appointment to chat things through.