How do I find a private GP?

[KatyMac]

I have googled - but there isn't much

I am going mad trying to get some help for DD

NiftyGeranium, a child has lost most of her vision. They have checked only her eyes and come to the conclusion it is psychological. How can they come to that conclusion without ruling out any other possibilities first? Alot of vesitibular and nureological conditions can effect the eyes, these need ruling out and the only way to do this I would have thought is by and MRI or CT scan.

*neurological

I do find it strange that they think a mother worrying about her child HAVING GONE BLIND of all things needs CBT.

I mean, it sounds utterly normal to me to leave no stone unturned.

I would second the thing about the German healthcare system, by the way. They do more tests than here, which is very much their style, but it would be useful for ruling things in and/or out. And the thing about being able to self-refer to a consultant is brilliant - we have done this in the past. Makes a change from all the faffing around in the UK.

I would suggest you fly to Munich and base yourself either there or in a local spa town if you want to do this (they are stuffed full with specialists). Let me know if you need local information and tips.

There must be an MNer in Yarmouth/local area that's a GP... surely?

if there were I very much doubt s/he would be willing to expose him/herself to this!

It was just a suggestion...

Whether or not I am doing the right thing is tbh immaterial; I am doing the only thing I can cope with. It all comes down to this (which I have said before).

Lets play devil's advocate say:

DD has a psychological condition
I refuse to accept it & run around trying to find a cure
What happens next......?

Maybe:

DD has a psychological condition
I do nothing
What happens next......?

Alternatively lets say

DD has a physical problem, diagnosed as psychological
I refuse to accept it & run around trying to find a cure
What happens next......?

Or even:

DD has a physical problem, diagnosed as psychological
I do nothing
What happens next......?

If I am wrong, then I am wrong & DD will be fine; I will look a pratt & my DD will know I will make myself look a fool for her

I can live with that

Seriously Katy, have a chat with the school nurse. She can refer your DD (IIRC).

Katy - please ignore the people that say just to accept her current dx - even if it IS correct, I don't see how it is possible to rule out a out a neurological cause behind her blindness without doing scans. It came on so quickly too..

I hope I'm being helpful, rather than insulting

Do you mind me asking what the trauma was behind the supposed PTSD/conversion disorder? (sorry if that's horribly nosy)

Well no-one knows really; but I'm sure it must have been upsetting

What about seeing:

Chris Verity at Addenbrookes for possible physiological issues?

and

Peter Hill at GOSH for possible psychiatric/psychological issues?

These are supposed to both be the 'consultants' consultant'.

Katy, from a laymans perspective, you're absolutely doing the right thing.

The trouble with our lovely NHS is limited resources. I have found that healthcare professionals frequently try to cut costs by avoiding scans/blood tests/other costly procedures as much as they can. When we lived in America, the first thing the doc would do were tests, to diagnose. whereas here doc diagnoses through symptoms/some form of trial and error

I would categorically not accept the diagnosis until proper tests are done, don't let them fob you off until you're satisfied that you know what's wrong with her, or at a minimum what's not wrong with her.

We have private insurance. Afaik, no private gp as such. You need to have an idea of who you want to see (perhaps call for paed, neurologist, opthamologist recommendations on MN, I gave no idea who you need to see), and then go to your GP and request a referal. Make it clear to your GP that you'll pay for it privately. Our GP is reluctant to refer to specialists, but as soon as we mention it will be done privately, we get immediate referal.

hth. Good luck and keep us posted on how you get on. It's a disgrace the way you're being fobbed off without any proper diagnosis done. an utter disgrace

KatyMac

You say

If I am wrong, then I am wrong & DD will be fine; I will look a pratt & my DD will know I will make myself look a fool for her

Is that the case though? I might be wrong, but I think that you had said that you had been given advice that it was important to 'ignore' the visual symptoms as much as possible, and to not treat her as someone who is visually impaired?
Are you able to do that at the same time as looking for a physical cause for her symptoms?

Only by the eye consultant - the psychologist has a very different view - much more supportive of DD and her sight loss

You see, if the consultants can't even agree on a course of action, how I am supposed to action it; especially when they are completely opposite

Katy - sorry to pitch in again as you are being bombarded with suggestions.

But it is clear that your relationship with your GP has broken down, both for yourself and your DD. You are now never going to want to see this GP for anything, small or large.

Can you register at a new GP surgery and request an urgent appointment for DD, and just start from scratch with a new person, a clean sheet of paper and no preconceptions. You shouldn't need to go into lots of detail, you can outline the basic facts that DD has been unwell off and on but is a robust, positive person. And suddenly lost her sight. Despite being reassured that it will come back "tomorrow/next week/ next month" it has not done so. Over to the new GP to suggest a course of action....

My GP diagnosed me, aged 15, with "being a bit stressed" because I was knackered and ill whilst taking GCSEs. Despite my and my mum's protestations that I was robust, intelligent and not in the least fazed by exams, he refused even to do a blood test. I went to another GP who instantly diagnosed glandular fever and proved it with blood tests. For whatever reason, sometimes GPs just get in a rut of thinking one thing about some patients, and will not budge from that view. You need to cut ties with your GP and go elsewhere.

I am actually still quite shocked that the NHS's response to a child going blind for no apparent reason anyone can fathom is to tell the mother to ignore the fact that her child appears to be - well - blind. And that the mother needs some sort of therapy in order to 'accept' it.

Actually I feel more than that. I feel outrage. I am at the point of driving up to Norfolk myself and kicking ass. Are these people MAD?

Even if it is psychological, you don't see kids going blind at school regularly, do you? You see them get tummy aches because of stress, wierd rashes, crying, and get nightmares, but going blind?

FFS

What course of treatment have the doctors suggested,other than to take time off school.

Boffin Mum

This is a recognised syndrome.
Katymac has told us that her DD has been seen and examined, and diagnosed.

Juvenile Bilateral Functional Amblyopia

obviously none of us here have seen Katymacs daughter, but it does seem that the professionals who have seen her are all in agreement about her diagnosis.

That would make sense, having read your link. It must be difficult to accept that stress is the cause of this condition if there is no obvious cause of the initial stress.

"Conversion disorder is one of the few mental disorders that appears to be overdiagnosed, particularly in emergency departments. There are numerous instances of serious neurologic illness that were initially misdiagnosed as conversion disorder. Newer techniques of diagnostic imaging have helped to lower the rate of medical errors."[http://www.minddisorders.com/Br-Del/Conversion-disorder.html from here]]

Oh yes - that would be the diagnostic imaging she hasn't had

this is quite long & interesting

KatyMac - been following this but don't think I have posted before.

You poor poor lady - what a nightmare for you and your family.

I have no knowledge of these matters but some knowledge of acessing private medical care etc and thought I'd let you know what I think.

1. Absolutely change your GP to another practice if at all possible. You need a GP who specialises in one or other of children/asthma/mental health. You had problems with your GP re asthma etc IIRC before all this happens.

1. Do you realise that you can have an appointment privately with ANY consultant/doctor who practices privately. The referral through a GP is really a formality so that GP knows you are seeing someone privately and so that the private doctor has their details. I assume you don't have BUPA therefore you will have to pay as you go.

1. Let MN help you find an appropriate doctor/doctors for you to see privately - then you can contact their secretary and confirm availabilty and confirm that all you will need is a GP letter.

1. I've looked at the information on conversion disorders etc - especially this link above - why don't you email that doctor through his website - he asks for Q's - ask him if he can explain the diagnosis process and whether he uses scans to rule things out.

1. If it is a "conversion disorder" they have not done a good job at explaining to YOU why they think so. Do you know if some of the eye tests showed "inconsistancies"? It sounds like your consultant was pompous "stake his career on the diagnosis etc" - very very poor - it is not about who is "proved right" here - it is about the best care for your DD and you.

1. A mother's instinct can be very strong. You will not be happy until you have persued the scan option. Unexplained headaches are scanned - so why not unexplained sight loss?

1. Absolutely take up the offer of the CBT - but make it work for you - relaxation - coping techniques - you will need this whether it is physical or psychological. I don't see how your views can be seen to be "irrational" where there is not an 100% certainty of diagnosis and no one has attempted to properly explain the diagnosis.

1. Can you/we find anyone else who's child has suffered from this eye "conversion" problem?

1. What does your DD think about this all - what is the atmosphere like at home etc - maybe the CBT can help with this. Does your DD accept the diagnosis?

I know

1. Really don't want to unless I absolutely have to - the other surgeries are miles away (this is already our second - not keeping a flu vaccine for DH who has chronic lung disease ended the first)
2. Maybe - pay & go def
3. Maybe
4. Have done
5. I agree - I am not denying that she had this - but I'm not convinced & I think she might have something else too
6. That's the way I feel
7. That is why I am going
8. Dandydan's DD does
9. DD is oblivious to it all - all the help and stuff is nice but a bit ott, 98% of the time with small outbursts of terror/upset/sadness

Re: Number 4

"I saw the detailed data and said.....hmmmmmmm....this is NOT a typical presentation of this kind of case at all.
The visual acuities are too bad. Usually they don't get worse than our 20/200 or 6/60 in your nomenclature.
Your daughter is MUCH worse....and it should not have gotten that bad and therefore doesn't really fit the diagnosis, although until proven otherwise one should begin treatment for that.

I felt strongly that something else was in play and was astounded that the medical people on your side of the pond did not seem to be taking your daughter's case seriously and simply kept saying it was psychological. Now I know in the US we are legal action crazy and much of what medicine does is what we call defensive medicine or CYA (let me know if you want the spelled out).
But I'm amazed that the medical people in the UK were willing to not look for the few zebras that might be there. (That's another medical inside thing.... :-) )

Now without any severe headaches it is unlikely that any bad thing is going on but it still seems that there should some form of brain scan be done and extensive blood work etc."