Wednesday, 23 April 2014

Sometimes things go right

Here we are, the other side of a manic Easter break, life continues in the way it tends to -  sometime a calm happy oasis of people in their own little worlds, sometimes a noisy chaotic mess of competing needs, mostly somewhere in between. 

This week, or perhaps next, we shall be diving back into our regular lives.  We don't have a routine or a schedule, but we do have a pattern to our days.  Shaped by external clubs and activities, places we need to be at set times.  Our time at home will continue to be worked around L's revision for his IGCSE's.  The first is less than a month away! Eek!

Last Saturday we got a letter.  A surprisingly nice letter.  A resolution to something that I wasn't really expecting to resolve so easily. 

Just before Christmas I went to an appointment at CAMHs with J.  We saw a Psychiatrist and a Clinical nurse specialist.  They were termed the "Neuro-development team", and this was to work out a next step in J's assessment process - there was a chance they could give us the diagnosis there and then, but that was always unlikely.

I left the meeting feeling dejected.  I could tell by their words and actions that they saw a lot less of J's issues than they needed to.  They seemed to have things out of balance - making a big deal out of tiny things, and minimising other difficulties that really affected day-to-day life.

The report that finally came through was worse than anticipated - and believe me I wasn't expecting anything useful!  There were factual errors, there were misrepresentations of things I had said, other stuff was left out, as in the meeting some things were inflated, others down played.

We took a few days to work out what to do.  After all, these are "The Professionals."  They Know Everything.  Could we do anything?  Was there any point trying?   It really felt like a "Them and Us" situation, we felt powerless.

When, after a few days, we were still both very angry we decided that for J's sake we had to at least try and get his reports and file to be representative of him and his issues.  As things stood we didn't recognise J from the description in the last report.  Anyone further down the line would be trying to diagnose or help a different child if they used the file as it stood.

So we wrote a letter.  Not an angry letter, not rude or confrontational, but as business-like and detached as we could manage.  We thanked them for their report and expressed our concern at the errors therein.  And then sentence by sentence we took apart their report and re-wrote it.  There was one paragraph in their three page report that didn't need altering.  Just one.  We listed what they had said, and then corrected it so that it reflected J.  Our letter was long, but it was also detailed and polite.

Then we waited.

The first contact we had was a letter telling us the Psychiatrist was on annual leave for three weeks.

The second thanked us for the letter and told us they would respond but it would take some time.  That one was already six weeks after we sent our letter, almost three months after the appointment.

And then, on Saturday, a third letter.

An amazing letter.

A letter that gives me hope that this slow and clunky system might just be able to work with us, and not against us.

The letter apologised for the delay in getting back to us.  They even thanked us for our letter, but the key phrase is :

As this report was based on information provided by yourselves . . .
They spoilt things a *tiny* bit by claiming the original report was "quite difficult to re-write" - surely it's a word processed document that they could have just amended?
Enclosed was a three page letter to be attached to the previous report.  They have basically taken our letter word-for-word, but each paragraph is begun with a phrase like "You added" or "You corrected."
It's all there - in our own words, with the things we feel are the biggest described in detail.
When we got the original report I had no idea if we had any way to do this, but by being polite but firm we have challenged the "experts", made the file more accurate, stood up for J, stood our ground.
So please, everyone out there, if "They" write something that is wrong, stand firm, challenge them, it CAN be done!
Now we face a wait for J to have an ADOS, but at least the paperwork shows him as he is, not some distorted twisted view, and that is the best we can hope for.

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