I need a better word than 'mismanage' it's not right/correct but (& you won't like it - I probably will rewrite it 7 or 8 times; you know like the letter to the boyfriend that dumped you)
"We have good news and we have bad news.....first the good news:
We are fairly sure, as a family, that DD can see again.
We are also fairly sure, as a family, that she is in a much stronger emotional position than she has been since before this began.
Now the bad news:
We feel that this whole situation has been mismanaged from the start. DD was a happy, cheerful soul, who had normal teenage (preteen) moods; she was a bit down when she was ill in the autumn and actually quite down after having Pleurisy in January. But she was OK.
Then at the end of February she lost her sight, suddenly, over 2 or 3 days and instead of scans and blood tests that were suggested at our initial A&E appointment, we had eye tests and were told it would be ?gone by tea-time? and we ?shouldn?t worry?. I think this initial contact at the hospital was the start of our insecurity and disillusionment with what has happened to us. What a bizarre and impossible thing to tell a parent of a seemingly blind child ? ?not to worry?.
No-one over the whole 21 weeks of this situation has taken DD?s blood pressure, or checked if she has an infection, or was anaemic, or considered her general health in any way. I think this was a mistake, these things should have been checked.
A lot has been made of my refusal to accept this ?psychological diagnosis? when in fact I have felt quite strongly, OK she has this ?conversion disorder? or whatever it?s called but I think there is something else going on as well. I didn?t know what that was or how I could find out but I was sure ?there was something else?.
Now I may have been wrong or I may have been right but we will never know because some basic checks (never mind the scans) weren?t done when DD was first presented at the hospital.
I think it?s very important for the next parents of a child with this condition to be treated differently. Parents ?know? about their child, they have intrinsic knowledge about how their child ?ticks?.
DD struggles to talk about her emotions with the psychologist but anyone who knew her before this incident would have said she was extremely good at vocalising and describing how she was feeling. She was previously articulate, with an excellent vocabulary she was able and willing to talk about how she felt, her emotions and how she perceived other people to feel.
I attended training called ?Right from the Start? some years ago it was developed by Scope for dealing with diagnoses, parents and children with more complicated problems. It was interesting, horrifying and disappointing that the concepts involved in the diagnosis and informing parents were missing."
There does need to be some more, but I'm not sure what yet....I do like bits of your Lougle, I'll have a think